Sunday, September 30, 2012

BUZZ: Last Chance!

Today is the last day to donate a portion of your purchase from 3E Love Wheelchair Heart's store, by simply entering GHFOUNDATION in the code box at checkout:

Saturday, September 29, 2012

Bee-Aware: Hydrocephalus Awareness

Many of our posts throughout the month of September have featured the faces of many of our own little bees to recognize hydrocephalus awareness month. The following video is from the Pediatric Hydrocephalus Foundation's campaign last year of "I am the face of hydrocephalus..."

Friday, September 28, 2012

Bee-Inspired: Positivity

I always tell parents that the most important thing is to always "believe in the impossible!" regardless of the fact that I've been criticized for delivering false hope in the face of a condition that is deemed "incompatible with life." How can it be possible to change the poor prognosis by simply believing that possibilities exist amongst the long list of impossibilites delivered to parents? 

"The positive thinker sees the invisible, feels the intangible, and achieves the impossible." - Winston Churchill

I believe, wholeheartedly, that when you focus on the things your child will achieve... those are the things most likely to happen. Not without a heavy dose of realism, of course, but certainly without any notice of the things those medical "professionals" are telling you aren't going to happen. We learn to let our children be the guide, treating them as if they can take on the world and helping them when they need the help! 

Here is a story from a Beliefnet email I received one day. If only we could always tell our doctors to treat our children as if their life is worth saving and preserving, the outcome would most often be much brighter:

A Dose of Positive Attitude
Michael is the kind of guy you love to hate. He is always in a good mood and always has something positive to say. When someone would ask him how he was doing, he would reply, "If I were any better, I would be twins!" He was a natural motivator. If an employee was having a bad day, Michael was there telling the employee how to look on the positive side of the situation.

Seeing this style really made me curious, so one day I went up to Michael and asked him, "I don't get it! You can't be a positive person all of the time. How do you do it?" Michael replied, "Each morning I wake up and say to myself, you have two choices today. You can choose to be in a good mood... or you can choose to be in a bad mood. I choose to be in a good mood. Each time something bad happens, I can choose to be a victim... or I can choose to learn from it. I choose to learn from it. Every time someone comes to me complaining, I can choose to accept their complaining... or I can point out the positive side of life. I choose the positive side of life.

"Yeah, right, it's not that easy," I protested.

"Yes, it is," Michael said. "Life is all about choices. When you cut away all the junk, every situation is a choice. You choose how you react to situations. You choose how people affect your mood. You choose to be in a good mood or bad mood. The bottom line: It's your choice how you live your life."

I reflected on what Michael said. Soon thereafter, I left the Tower Industry to start my own business. We lost touch, but I often thought about him when I made a choice about life instead of reacting to it.

Several years later, I heard that Michael was involved in a serious accident, falling some 60 feet from a communications tower. After 18 hours of surgery and weeks of intensive care, Michael was released from the hospital with rods placed in his back. I saw Michael about six months after the accident. When I asked him how he was, he replied. "If I were any better, I'd be twins. Wanna see my scars?" I declined to see his wounds, but I did ask him what had gone through his mind as the accident took place.

"The first thing that went through my mind was the well-being of my soon to be born daughter," Michael replied. "Then, as I lay on the ground, I remembered that I had two choices: I could choose to live... or I could choose to die. I chose to live."

"Weren't you scared? Did you lose consciousness?" I asked.

Michael continued... "The paramedics were great. They kept telling me I was going to be fine. But when they wheeled me into the ER and I saw the expressions on the faces of the doctors and nurses, I got really scared. In their eyes, I read "He's a dead man. I knew I needed to take action."

"What did you do?" I asked.

"Well, there was a big burly nurse shouting questions at me," said Michael. "She asked if I was allergic to anything. "Yes, I replied." The doctors and nurses stopped working as they waited for my reply. I took a deep breath and yelled, "Gravity." Over their laughter, I told them, "I am choosing to live. Operate on me as if I am alive, not dead."

"Michael lived, thanks to the skill of his doctors, but also because of his amazing attitude. I learned from him that every day we have the choice to live fully. Attitude, after all, is everything. Matthew 6:34 states: Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

After all, today is the tomorrow you worried about yesterday.

Enjoy each day, each breath and mostly... each and every friend.

And remember to start each day with an "attitude of gratitude!"

Thursday, September 27, 2012

Thoughtful Thursday: Vaccinate

I know that the topic of vaccinating your children is a hot point in the world of parenting. I'm not looking to debate the controversy, simply hoping to enlighten some to the opposite side. The side of those parents who have a child with medical complexities leaving their life a bit more fragile.

...some children can die from the flu, which is generally caught from someone who was not vaccinated because they are healthy enough to fight it...

But, that's not the case for all children or even all adults. Not all bodies are strong enough to manage the many obstacles they have to hurdle along with battling a cold, or even worse the flu! And while the vaccine does prevent more serious cases of the flu in most healthy individuals; in our children, nothing is a guarantee. Two general factors determine the effectiveness of the vaccine at any given time, not to mention that the vaccine protects against the three most common strains of influenza and there are many much more rarer in existence:

1) characteristics of the person being vaccinated (such as their age and health)
2) the similarity or "match" between the influenza viruses in the vaccine and those spreading in the community.

From the Centers for Disease Control as shared on Disability Scoop:

CDC Warns Of Flu Risk For Kids With Disabilities
August 29, 2012

Children with intellectual disability, cerebral palsy and other neurologic disorders are at much greater risk of complications from the flu, federal health officials said Wednesday.

In a study looking at the 2009 H1N1 flu outbreak, the U.S. Centers for Disease Control and Prevention found that a disproportionately high number of kids with neurologic disorders died as compared to other children. What’s more, of those conditions, the most frequently cited were intellectual disability, cerebral palsy and other neurodevelopmental disorders, researchers reported in the journal Pediatrics.

The 2009 flu season was significant because the number of children who perished during the pandemic that year was more than five times higher than the median for the previous five flu seasons.

For the study, researchers reviewed data submitted to the CDC by state and local health agencies on influenza-related deaths in children. They found that 68 percent of the kids who died had an underlying medical condition. And of that group, the majority — 64 percent — had a neurologic disorder, researchers said.

“We’ve known for some time that certain neurologic conditions can put children at high risk for serious complications from influenza,” said Lyn Finelli, chief of the surveillance and outbreak response team in the CDC’s Influenza Division. “However, the high percentage of pediatric deaths associated with neurologic disorders that occurred during the 2009 H1N1 pandemic was a somber reminder of the harm that flu can cause to children with neurologic and neurodevelopmental disorders.”

In many cases, children with a neurologic disorder who died from the flu also had a coexisting condition like a pulmonary disorder, metabolic disorder, heart disease or a chromosomal abnormality, which exacerbated their risk, researchers said.

Pneumonia and acute respiratory distress syndrome were the most often reported complications among the children with disabilities who lost their lives.

Officials at the CDC say that kids with neurologic conditions have continued to be disproportionately impacted by the flu in the years since the H1N1 pandemic.

Data show that most of the children who died in 2009 were not vaccinated. The CDC is urging everyone over age 6 months to get an annual flu vaccine to mitigate risk for the illness.

So, please... while we battle with the decision to vaccinate our children for possible risk of complications from the vaccine itself, please vaccinate to keep your healthy children healthy and from sharing further complications with our more fragile children this cold & flu season. If you do not vaccinate, that is ok too as it's a personal decision, however we ask that you keep your children (and yourselves) home and out of public places when ill. Our little lives depend on it.

Wednesday, September 26, 2012

Bee-worthy Share: Trick-or-Treat

I know you all have been in the stores and seen that Halloween decor and festivities are top of mind for most with aisles full of candy, costumes, decorations, and lots of trick-or-treating supplies.

 What about those children who cannot partake in the traditional Halloween fun, food, and game?

Our friends at the CLU Campaign, who work to search out inCLUsion events for ALL kids, have the perfect solution and it is so simple to participate in! From their website, here are the details:

Trick-or-Treat Project
38 days, 17 hours, 30 minutes, and 53 seconds left until Halloween!
We are committed to providing a healthy, inclusive approach to Trick-or-Treating.

Kids love candy. However, for many kids candy is simply not an option. Between childhood obesity, juvenile diabetes, food allergies, and other special needs, the population of children excluded from Halloween traditions grows each year.Help make Halloween fun for ALL kids!

It’s as easy as 1-2-3
1. Add some non-food treats
2. Print out a decal
3. Share Halloween fun with ALL kids

We’re not suggesting you ditch candy all together, just please ADD some non-food treats to your Halloween offerings so kids who can’t eat candy have fun options too!

There are many non-candy treats available, and you may be surprised to learn that many of these treat-alternatives cost about the same as candy.

How it Works:
Download, and print out the large image. Or, if you are in the Austin, Texas area, you can stop by your local Coffee Bean and Tea Leaf to pick up a copy – while supplies last.
On Halloween display this image on your door, window, anywhere visible from the street/sidewalk. This will let Trick-or-Treaters know that non-perishable treats are available at your home. You may also register your address (we do not require any personal information) as a CLU home. Trick-or-Treaters can view the CLU Map to see participating homes nearby.

If you would like your child to participate, download the small image (the small image is formatted to work with Avery 5164 stickers and is also available at Austin area Coffee Bean and Tea Leaf). It will print 6 per page. Cut out, then pin the small image to your child’s costume. When participating homes see your child wearing the image they will know to provide a non-perishable treat as opposed to candy or other edible treats.

Maybe you would like to participate, but you don’t know how. No worries, below we provide some alternate treat ideas as well as locations where these treats are available.

Help us spread the word. Like us on Facebook. Link to us on Facebook. Download and share our flyer. You can print out a flyer and post it by your neighborhood mailboxes, on your office bulletin board, on your church bulletin board, at your child’s daycare or school or email it to your friends and family. Anyway you can help us spread the word is greatly appreciated.

Monday, September 24, 2012

Announcement: Bee-Business Partnership

We are THRILLED to announce that our bee-beauty Peyton's mommy, Linsey, is now donating a portion of all sales at her store Oh How Cute to Global Hydranencephaly Foundation.

So many items to choose from, all custom made to order! Tote bags, team wreaths, monogrammed items, and other items for the entire family!

Peyton, featured in the ad with her mother Linsey, was diagnosed with hydranencephaly when she was a day old and has blessed her loved ones with over 6 years of love. We are so thankful to our hydran-family for their gracious donation of time, talent, and sincere dedication to help GHF on their mission of reaching more families like Peyton's. Thanks Linsey!

Find Oh How Cute on Facebook or on the Website

Saturday, September 22, 2012

Bee-Inspired: Quotable Quote

On Facebook? Be sure to find us there and check out more of our "bee-isms" to share on your own timelines and pages, many of which share our own little bees!

Friday, September 21, 2012

Flashback Friday: D-Day

D-Day = Diagnosis Day. 

Every parent remembers it like it was yesterday and while I'm sharing my personal experience, sadly it mirrors most others. Rarely do we find a family who is given hope and inspiration at the time the diagnosis of "your child does not have a brain" is delivered... I can think of one case off the top of my head. And I've spoken with hundreds of people who have been on the receiving end of those words. Rarely is the actual word "hydranencephaly" even mentioned, just "no brain"

"the baby is missing their brain. they will not see, eat, hear, or recognize their surroundings. they will live in a permanent vegetative state. they will likely suffer painful seizures, temperature regulation issues, and possibly heart and respiratory complications. if they live a few weeks, you'll be lucky."

Some parents get this diagnosis while they're pregnant, when they're supposed to be relishing a bliss-filled pregnancy experience. That is stripped away from them in an instant, as if they baby should no longer be celebrated. In fact, the diagnosis in utero often accompanies encouragement to terminate the pregnancy. That encouragement is based on the medically subjected misconception that the baby will not survive to term & if they do, it won't be a life worth living. My baby was no longer even called a "baby" instead it was "it" or "they" and he even had a name "Brayden Alexander"

"you can sign them over to the state and they can be cared for here in the hospital until they pass. you can visit if you'd like, or we can call you when they pass away."

Those words are delivered as if that's the only option. As if taking them home is not feasible; if it was, than you're ludicrous for wanting to take your ticking time bomb home to love them. Crazier yet, you're seconds away from a straight jacket when you ask for more information or family support groups.

"support groups and information does not exist for this condition since it is extremely rare & children do not survive. we can put you in touch with an infant loss support group and print off some general information for you."

"Infant loss support group," ... my child is living! The information I was given is the following information from the National Institute of Neurological Disorders and Stroke, from the National Institutes on Health. Their tagline is "reducing the burden of neurological disease..." This "packet" of information was a sheet or two of printer paper placed in a manila envelope, which was promptly thrown away once I arrived home from the hospital... with my little man.

NINDS Hydranencephaly Information Page

What is Hydranencephaly?
Hydranencephaly is a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid. An infant with hydranencephaly may appear normal at birth. The infant's head size and spontaneous reflexes such as sucking, swallowing, crying, and moving the arms and legs may all seem normal. However, after a few weeks the infant usually becomes irritable and has increased muscle tone. After a few months of life, seizures and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain) may develop. Other symptoms may include visual impairment, lack of growth, deafness, blindness, spastic quadriparesis (paralysis), and intellectual deficits. Hydranencephaly is considered to be an extreme form of porencephaly (a rare disorder characterized by a cyst or cavity in the cerebral hemispheres) and may be caused by vascular infections or traumatic disorders after the 12th week of pregnancy. Diagnosis may be delayed for several months because early behavior appears to be relatively normal. Some infants may have additional abnormalities at birth including seizures, myoclonus (spasm or twitching of a muscle or group of muscles), and respiratory problems.

Is there any treatment?

There is no definitive treatment for hydranencephaly. Treatment is symptomatic and supportive. Hydrocephalus may be treated with a shunt (a surgically implanted tube that diverts fluid from one pathway to another).

What is the prognosis?

The outlook for children with hydranencephaly is generally poor, and many children with this disorder die before age 1. However, in rare cases, children with hydranencephaly may survive for several years or more.
What research is being done?

The NINDS conducts and supports a wide range of studies that explore the complex mechanisms of normal brain development. The knowledge gained from these fundamental studies provides the foundation for understanding how this process can go awry and, thus, offers hope for new means to treat and prevent developmental brain disorders, including hydranencephaly.

"in rare cases, children with hydranencephaly may survive for several years or more."

I literally can recite the NINDS definition of hydranencephaly word for word, I read it that many times. I can likely, four years later, still recite it nearly word for word.

I cried, then I doubted it, then I was determined...

I remember telling Brayden's dad and my own mother that there was no way that this is what Brayden had, there had to be a mistake. He was alive. He had a big 'ol noggin' but he wasn't doing any of these things they said he should be doing and he was doing all of the things they said he shouldn't be doing!! We took our 'lil man home because even if my heart was wrong, I knew I wasn't leaving him behind and giving up on him. The hospital signed us up for hospice and during discharge they gave me our follow-up appointment dates with an additional, "if he makes it until then." They even informed us that they had called the local rescue department and let them know we may call them when he dies... 

Brayden is 4 years old; some of his friends are much older and the oldest is the same age as his mother!! Just when you may wonder why Global Hydranencephaly Foundation is in existence, it is to be that group of individuals who can offer hope, support, and guidance when the people you rely on the most (your medical "professionals") can't. 

The National Institutes on Health has the following in their mission:
"NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce the burdens of illness and disability."

One day, the information that exists will not be the doom and gloom prognosis delivered now, but rather a more optimistic outlook of the possibilities that DO exist amongst the list of limitations that MAY exist. Hydranencephaly will be a condition that is researched and delivered with much more grace and knowledge than exists at this time. We are working hard for that & our dedicated volunteers are committed to changing the lives of our little ones and those to come in the future. 

"A child with hydranencephaly only has the chance at a quality of life that you will give them; take all hope away and that life is taken away as well. Care for and love them, open their world to all the possibilities that exist to every other child and they will lead their own way; not without limitations but still full of possibilities. Believe in the impossible!" ~Ali Harper, Founder 

Thursday, September 20, 2012

Thoughtful Thursday: Hydrocephalus Awareness

In continued recognition of hydrocephalus awareness month, through the rest of September, I encourage our hydranencephaly families to find much inspiration and hope in how far the campaign has come. Resources and information available on hydrocephalus have increased greatly over the course of the past half century, from a few lines of information in a medical textbook to an entire month devoted to it's awareness, and there is more work to being done. 

Approximately 1 million individuals of every age are affected by hydrocephalus, with an estimated one in 500 congenital cases reported. 

Surprisingly, the termed "father of medicine" Hippocrates, was the first physician to document and treat what was and is often called "water on the brain". Greeks are reported to have treated hydrocephalus by wrapping pieces of bark around an individuals' head, while many other individuals involved in early studies of neurology through history had treatments and scientific evidence of their own. You can read more in the article from MedScape "History of Hydrocephalus and its Treatment."

Hydrocephalus is as common as Down Syndrome and more common than Spina Bifida or brain tumors.

Many cases of hydrocephalus result in a later diagnosis of hydranencephaly; the opposite in diagnoses often occurs as well with a hydran diagnosis being dispelled upon placement of a shunt.
the affected brain can be hidden by severe hydrocephalus as it is pushed to the inner walls of the cranial cavity
image courtesy of
With persistence of the affected community in exploring treatment options and focusing on the possibilities that exist for those given a diagnosis of hydrocephalus, research continues and the overall prognosis has improved considerably. No longer are individuals institutionalized and maintained with little to no quality of life in group homes, institutions, and even put on display in circus freak shows. But the work is not complete and awareness remains essential to save the lives of those across the globe who deserve a chance.

Monday, September 17, 2012

BUZZ: Fundraising

our fundraising partnership with 3E Love's Wheelchair Heart line of merchandise is about half-way through... have you picked up some great items to support the loved ones in your life who rely on wheels to enjoy a fulfilled life? 

BELIEVE T-Shirt - PinkTie-Dye - Long-Sleeve T-shirtBELIEVE Hooded Pullover

We couldn't have asked for a better opportunity to represent a company we believe in wholeheartedly, their trademarked wheelchair heart symbol means so much to so many! 
Wheelchair Heart 1" Buttons
From their web site:

3E Love's registered trademark, the "International Symbol of Acceptance" also known as the "wheelchair-heart logo," is the drive behind much of the company's goals and products. It is a symbol of society accepting people with disabilities as equals and a symbol that people with disabilities accept their challenges and even embrace them. By replacing the wheel with a heart, the stigma of the wheelchair is also removed, and it can be a symbol for people with any disability or impairment. It represents the person, not society's perception of him or her.

The symbol is an attitude and a lifestyle. It's accepting one's abilities and rallying around that diversity and turning it into strength. It's loving and living life to the fullest no matter who you are and what you look like, no matter what you can or cannot do.

It's a positive alternative to the traditional "handicapped symbol", where the focus is person's differences and a wheelchair. Only a small portion of people utilizing services associated with the symbol use wheelchairs. People with such an array of conditions as muscular dystrophy, cerebral palsy, paralysis, down syndrome, autism, visual impairments, hearing impairments, Multiple Sclerosis, Alzheimer's, Parkinson's and even natural age-related impairments should not all be grouped by such a stigmatizing symbol. The traditional symbol screams "Beware. Someone different parks here." or "Pity them and give them charity."

That's one thing the symbol is not - a symbol of pity. One of Annie's greatest fears was that the meaning of our symbol would be related to charity, or the quest for a cure. It is of course a result of ignorance when people see our symbol and automatically ask "Where do I donate?" -- that's an ignorance we hope to change. And it's also the reason we attached it to a business, entrepreneurship, and products. It's a flat out statement if 3E Love is successful from a business perspective that people with disabilities can achieve things without a handout. Behind our symbol is a company started by people with disabilities, with pride, joy and passion for who they are and what they can achieve. Call it a "cause" if you insist, as long as the cause has nothing to do with wishing for change to who we are, but instead change to how we are perceived.

To Annie, it was the tattoo on the back of her shoulder that opened up so many doors for her. People would come up to her on the street and tell her how much they liked it. She would befriend them, and they would realize that she is more than a woman in a chair. It was a social conversation piece at the start. It took a few years for her to realize it was so much more and could have a positive impact on others the way it had for her.

To Stevie, it means – "No I am not in a wheelchair, I use one – and I love that I do! I wouldn't change that for anything. Everything I am and who I have become is directly connected to my disability. And I love the life I have, and try to love it even more on the bad days. The symbol is also a statement – I am not just a person in a chair, I am a man who has friends and a family, who loves, who wants to be loved, who is educated, wants to achieve great things, and who wants to love every year on earth, whether it's 85 or 28 years."

28 oz. Aluminum Water Bottle w/ Free CaribinerSterling Silver Wheelchair Heart Necklace - LargeInsulated Lunch Bag
Products range in price from temporary tattoos for $1, stickers for $2 and up to tees around $12-$18, jewelry around $20, and sweatshirts around $30. You are sure to find something for everyone, so shop now or share our fundraising efforts with your own family & friends to support our cause.

BUZZ: Happy 2nd Birthday!!

Tuesday, September 11, 2012

BUZZ... announcement

Bennett Buzz-bee and our global logo are now copyright registered! 

 The people behind Global Hydranencephaly work incredibly hard and do so through volunteering their time, energies, and talent to helping us be successful; thus they are extremely prideful of their work and continue to work hard to ensure we maintain our great reputation along the way. 

There are specific laws that are entailed and we simply must remind you of some of these stipulations to ensure you all are protected as well as our level of professionalism when it comes to activity involving GHF. If any of the following is unclear and prompts any further explanation, please do not hesitate to email with questions/concerns to 

- Brayden Alexander Global Foundation for Hydranencephaly was incorporated as a nonprofit organization in the Commonwealth of Virginia on June 11, 2011. We function by a governing document of by-laws and articles of incorporation, which were devised by our acting Board of Directors at incorporation time, and approved by the State Corporation Commission. 

- Since then, we have adopted the “doing business as” name of Global Hydranencephaly Foundation for ease of use purposes and to avoid any misrepresentation in usage of services and finances. This is the current name you will find associated with our mission and vision, but those things have never changed… simply the name. 

- GHF expects to receive their official 501c3 nonprofit tax exempt status no later than the end of 2012. While we are a professional entity, we are also very new to the world of nonprofit business and learning as we go. While it has taken a considerable amount of time to achieve, tax exemption shall be retroactive to the date of incorporation, for those who have donated and are awaiting tax exemption confirmation.

- Our business name in its entirety, or utilizing simply the dba, has an active trademark application open which will limit the usage of it by an individual and/or other organizations or business without written permission. A trademark protects words, phrases, symbols, or designs that distinguish GHF from other similar organizations.

- Our logo; to include Bennett Buzz-bee with the name “Global Hydranencephaly Foundation” above, “Believe in the Impossible” within, and our foundation web site are now copyrighted. National copyright laws generally allow the use of limited portions of the work, including quotes, but only for purposes such as news reporting and private personal use. 

Trademark protects the business name, while the copyright protects the original works of authorship. In the case of our logo, Sarah Garcia designed our bee and gave full permission for its usage in our logo design as it stands today. This copyright gives GHF economic rights enabling the controlled use of our logo when making copies, issuing copies to the public, performing in public, broadcasting, and utilization online. GHF also maintains the morals rights to be identified as the creator of the logo, and the right to disallow distortion or mutilation of it.

GHF holds the exclusive right to use or authorize others to use the work on agreed terms, such as in instances where our logo is utilized in printable files via our web site and in online publications where GHF has given this permission or created the works themselves. We have the ability to prohibit or authorize its reproduction in a variety of forms, its usage in public broadcast, and even its translation in to other languages. However, in cases that representation will be fitting of the mission and vision of our organization, as well as appropriate recognition of Global Hydranencephaly Foundation, simple written request is sufficient for permissive use.

Bee-Worthy Share: Sibling Appreciation Day

"You don't choose your family. They are God's gift to you, as you are to them." 
- Desmond Tutu

I am sure most families would agree, that siblings of a child who has special medical circumstances grow in to a new breed of individual. They are kind, compassionate, understanding, and always willing to help with an open-mind and nothing but love in their hearts. The siblings are often set aside during hospital stays, medical emergencies, or day-to-day events when their brother or sister requires so much attention from their parent. 

Our friends at Pediatric Hydrocephalus Foundation are hosting a Sibling Appreciation Day on Saturday, September 15. If for no other reason at all, be sure to check out the adorable pictures shared there and share one of your own child with hydrocephalus and his/her brothers and sisters! You'll see Brayden there with his sisters Isabella & Adysson:
"There's no other love like the love for a brother. There's no other love like the love from a brother."
~Terri Guillemets

From the Facebook page for PHF Sibling Appreciation Day: 

"The PHF is proud to announce as part of its 'Families First for Hydrocephalus', a new program for all Hydrocephalus families. In the battle and fight against Hydrocephalus, the family unit is very important. 

One of the often forgotten soldiers in this battle is the sibling(s) of the person with Hydrocephalus. The PHF wants to thank those brothers and sisters by introducing "Hydrocephalus Sibling Appreciation Day" around the Country on September 15th 2012 to coincide with September's National Hydrocephalus Awareness Month.

**10 Families will be randomly chosen on Saturday, Sept. 15th, 2012 in honor of PHF~Hydrocephalus Sibling Appreciation Day!

**Winners will receive a Family Fun Movie Night Package compliments of the PHF, Inc.!

1) Post a pic of your child with Hydrocephalus posing with their sibling(s).
2) You must "LIKE" our main Pediatric Hydrocephalus Foundation community page. Visit us here:

"When you look at your life, the greatest happinesses are family happinesses."  
~Dr. Joyce Brothers

Sunday, September 9, 2012

Bee Inspired: Grandparents Day 2012

"We find delight in the beauty and happiness of children that makes the heart too big for the body."
~Ralph Waldo Emerson

As we learned last year on this day, Grandparents Day is a true holiday... not one created by card and gift manufacturers as many other holidays have become. If interested in reading more, visit our last year's post by clicking on:

This year we celebrate those amazing grandparents in the lives of our little bees, yet again! 

"The feeling of grandparents for their grandchildren can be expressed this way: “Our children are dear to us; but when we have grandchildren, they seem to be more dear than our children were." ~Henry Old Coyote

"What children need most
are the essentials that
grandparents provide in abundance.
They give unconditional love, kindness, patience, humor,
comfort, lessons in life.
And, most importantly, cookies."
~Rudolph Giuliani

Saturday, September 8, 2012

BUZZ-Worthy Share: Hot off the Press!

The Bee's Buzzzzz.... 

is the quarterly newsletter for Global Hydranencephaly Foundation, hot off the press overnight! It is always filled with birthdays, angel days, fundraiser updates, and so much more... 

Here is the link to the pdf file from our Web site:

But you can go HERE and take a look at our past publications as well.

As always, we are always open to suggestions. If there is anything else you'd like to see in our newsletter, feel free to message our Head of Research & Media Department, Holly, via our contact page or email myself, Ali, at

Friday, September 7, 2012

Flashback Friday: Hydrocephalus Awareness

Reminiscing is so important to remind us all how far we have come... when your child is living with a complex medical condition, such as hydranencephaly, looking back is that much more important.

Looking back via pictures is most important to the parent(s) who see their child day in and day out, unable to witness the transformation as it happens before their eyes; a good reminder to that parent of how far they and their child have come together... how much they have both grown and overcome. Not only is it therapeutic for the parent and/or caregiver, but encouragement and guidance to those who are travelling the same or similar journey far behind.

Every week in our "Flashback Friday" series, we encourage our families to use this opportunity to share their glimpses in to the past with our readers here. A milestone met, a life-altering event, pictures, stories, and lessons learned... all of the stepping stones and set-backs, moments that took your breath away, and "typical" days you'll remember in your "a-typical" child's life. 

Please share these with us by emailing to

And for this week's post, meet Addison:

Addison is nearing her 6th birthday...

but at the tender age of 3 months old, she had her life-saving shunt placed for hydrocephalus management:

and at her first birthday:

Thanks to bee-mommy to Addy, who just so happens to be the Vice President of Global Hydranencephaly Foundation, for sharing her sweet girl with the world!