Thursday, December 27, 2012

Thankful Thursday: Our Volunteers

Always recognizing those things to be thankful for... one is to thank those of you who participated in yesterday's text to donate event with Wish Upon a Hero. We raised a whopping $465 which will be used to help fund our first ever Hydranencephaly Conference in Dallas, Texas in June 2013... as well as assist with any need-based funding for families.

Global Hydranencephaly Foundation is 100% volunteer led; most every individual who has donated time and/or talent has a child with hydranencephaly themselves.  We will be introducing you all to our volunteers through the coming months, right here on our blog...  and we are always looking for more individuals who would like to help us on our mission. Feel free to email me, Ali, at

In the meantime... what are you thankful for? 

Tuesday, December 18, 2012

Toy-FULL Tuesday!

A little help for those who are still shopping, from our friends at Friendship Circle Blog. And don't forget to sign up to donate a portion of every online purchase you make at participating retailers through

Tuesday, December 11, 2012

BUZZ: Happy Birthdays... TWO of them!

Here is what 6 years of amazing looks like...

and 2 years of amazing...

BUZZ: Hot Off the Press!

Check out our latest edition of the Bee's Buzz.... our quarterly newsletter! Also packed to the brim with tons of information on the going's on of our foundation and our little bees across the globe! While you're there, feel free to catch up on past editions you may have missed that you can find HERE:

Monday, December 10, 2012

Manic Monday: Out and About

Getting out and about with kids who require extra equipment is not an easy task, but most parents will happily go the extra mile to include their children in even the most mundane of daily tasks. Those occasions, sadly, meet with stares and sideways glances... 

Another misconception that those who have never been a big factor in the life of a child with a medically complex diagnosis, is that our kids are a burden or that their needs take up so much of our time that we resent that fact. Comments such as:

"I'm so sorry for you!"
"You poor thing, it must be so tiring caring for them."
"Won't you be glad when you can have some time to yourself for a change?"

or worse, when your child's time on earth has come to an end:

"Thank goodness their suffering is over. You must be so relieved to be able to do the things you've wanted to do for yourself for a change." 

they're all common, believe it or not.

When the fact of the matter is, every special need parent I have met along the way will agree that their child... despite the complexity of the condition or the challenges faced... is a blessing to every life they touch on their journey. Never a burden and certainly not one to be pitied. 

Next time you see a parent with a child who has obvious extra medical care needs, feel free to ask about their child... with a smile, of course. Not because you pity them, but because just like any other parent... that parent LOVES to talk about and brag on their child.

"I am a parent of a child with special needs. Yesterday I had to explain to a stranger your diagnosis. I saw pity in their eyes. But for the first time I smiled inside. Because I know how lucky I am to have found unconditional love, and actually, I pitied the stranger. For I know more strength, I know more goodness, I know more love now than before you were in my life little one. You have indeed, found the better part of me."

~from our friends at HOPElights

Saturday, December 8, 2012

Holiday Shopping & Giving Back

Want an easy, effortless, and FREE way to give back this holiday season (and after, for that matter)? Sign up with and do your shopping at the 1000's of stores that have offered to donate a percentage of your sale to your favorite cause. If you download iGive's toolbar button, it makes shopping and donating even more effortless by popping up when you visit your favorite online stores.

Just to let you know a few of my favs: Amazon, JCPenney, Macy's, Home Depot, Barnes & Noble, and the list goes on and on. Maybe you will even find a new favorite online store while you're there!

Here's the link & we hope you'll join us in making a world of a difference to our families across the globe:

Make an even bigger impact by sharing this link with your family & friends as well!!

Friday, December 7, 2012

Flashback Friday: CNN & Deepak Chopra today

Flash back to even 20 years ago and you will hear of babies diagnosed with rare, debilitating neurological conditions being institutionalized and given up on far more often than not. While hope is still presented as minimal to non-existent for our children with hydranencephaly; optimism in the medical community does continue to grow and our hope is that those who are responsible for helping families provide their child with the best quality of life possible will expand their knowledge of such conditions. 

From our friends at Children's Neurobiological Conditions, as well as presented on CNN with Deepak Chopra, comes this great article; with mention (though they did not say hydranencephaly) of a previous article written by British neurologist Dr. John Lorber in 1980 called, "Is the Brain Really Necessary?". 

Reinventing the brain is closer than you think

We're living in a golden age for brain research, which could revolutionize how we think, feel and behave
November 9, 2012
Source:  By Deepak Chopra, Special to CNN

Thanks to brain scans like the fMRI, brain activity can be localized and even the most precise activity pinpointed. For example, researchers can spot the minuscule area in the visual cortex that, when damaged, prevents a person from recognizing faces, including his own. The slant in neuroscience has been to map the brain down to the tiniest detail.

But what will we use the map for? One obvious area is medicine. The more we know about what goes wrong in Parkinson's disease and Alzheimer's disease, the closer we get to a cure. But the highest goal would be to reinvent how we use our brains.

"Reinvent" isn't an exaggeration. Ten thousand years ago, Homo sapiens had evolved the same genetic array that modern people inherit. But in those 10,000 years arose reading, writing, advanced art and music, government, mathematics and science. Their foundation was a new relationship between mind and body.

If genes and a fixed structure of brain cells told the whole story, it would remain a total mystery why a cave dweller after the last Ice Age should have just the right complement of neurons to discover gravity or write a symphony. Now we realize that the human brain is far from fixed, at any level.

New brain cells are being formed throughout life; trillions of connections between neurons are developed; and the genetic activity inside each neuron is dynamic, responding to every experience and every stimulus from the outside world.

Human beings reinvent the brain as we go along, day by day. It's not a matter of eons. In short, the brain is a verb, not a noun. It is reshaped by thoughts, memories, desire and experience.

Because it is dynamic, fluid and ever-renewing, the brain is much more malleable than anyone ever imagined.

Consider a controversial British medical journal article from 1980 entitled "Is the brain really necessary?" It was based on the work of British neurologist John Lorber, who had been working with victims of a brain disorder known as hydrocephalus ("water on the brain"), in which excessive fluid builds up. The pressure that results squeezes the life out of brain cells. Hydrocephalus leads to retardation as well as other severe damage and even death.

Lorber had previously written about two infants born with no cerebral cortex. Yet despite this rare and fatal defect, they seemed to be developing normally, with no external signs of damage. One child survived for three months, the other for a year.

If this were not remarkable enough, a colleague at Sheffield University sent Lorber a young man who had an enlarged head. He had graduated from college with a first-class honors degree in mathematics and had an IQ of 126. There were no symptoms of hydrocephalus; the young man was leading a normal life.

Yet a CAT scan revealed, in Lorber's words, that he had "virtually no brain." The skull was lined with a thin layer of brain cells about a millimeter thick (less than 1/10 of an inch), while the rest of the space in the skull was filled with cerebral fluid.

This is an appalling disorder to contemplate, but Lorber pushed on, recording more than 600 cases. He divided his subjects into four categories depending on how much fluid was in the brain. The most severe category, which accounted for only 10% of the sample, consisted of people whose brain cavity was 95% filled with fluid. Of these, half were severely retarded; the other half, however, had IQs over 100.

These findings were not seriously challenged as being false or distorted. The controversy arose over how to explain them. Even now, when the old view of a fixed brain has been replaced, such radical adaptability is mystifying.

But it seems undeniable that reinventing the brain is viable. Stroke victims are rehabilitated on that basis, training undamaged areas of the brain to take up functions lost from the stroke. Efforts in autism and schizophrenia are also proceeding on the possibility that brain dysfunction is setting in months or years before the appearance of symptoms. If these pre-symptomatic changes can be addressed soon enough, the full-blown disease could be averted or greatly lessened.

A similar approach to Alzheimer's that examines brain changes in young adults who may be genetically susceptible to the disease could reverse that susceptibility through drug therapy.
Once medical science accepts that the brain can be reinvented, there is no limit. Together with Dr. Rudolph E. Tanzi, professor of neurology at Harvard Medical School and a leading researcher on Alzheimer's, my efforts have been directed at how each person can relate to the brain in a new way.

As we argue in our book "Super Brain," the most direct way to improve brain function is through the mind.

The mind-body connection is powerful because our habits lead to brain changes. What you pay attention to, what your passion is, your approach to diet, exercise, stress and even basic emotions like anger and fear -- all of these things register in your brain and drastically shape its structure.

In the simplest terms, every experience is either positive or negative when seen as input for the brain. A brain that is processing positive input will grow and evolve much differently from a brain that processes negative input.

This has always seemed intuitively right; we all know that children who are well-loved, for example, almost always turn out better than children who are abused. Now, we have validation from neuroscience.

The most important conclusion is that no one needs to submit to old conditioning. The past can be changed by changing the brain, just as the future can be shaped by how your brain is trained today. Reinventing the brain is much closer than you think.

Thursday, December 6, 2012

Bee Aware: Nap Nanny Product Alert!

Nap Nanny Generation Two model

I know many special needs parents, as well as parents of typically developing little ones, who have this product for their child. There have been 5 reported infant deaths, as well as many other injuries from falls. Please use extreme caution when using this product and read more on the case against filed by the U.S. Consumer Product Safety Commission against the manufacturer of the Napy Nanny by visiting the official press release from the CPSC here.

Tuesday, December 4, 2012

Toy-FULL Tuesday

Tuesdays we try and feature a great product that our little ones with extra special necessities can benefit from... while not ordinary toys, in a traditional sense when talking about "typical" kids, children with special needs require play in a different manner. Therapies to build muscles and reduce spasticity, as well as offer the extra support to keep the child safe are essential. 

A great item I've discovered is the Merry Muscles Exerciser. Think a Johnny/Jenny Jump-Up for bigger kids who need extra support for low tone and weaker muscles. Check it out on their web site and let us know if you have one or have ever tried one for your own special little one:

From the website:

Product Description
Special needs Merry Muscles, sized larger to accomodate an older/bigger child. The design is the same as the infant model, simply in a larger scale. For children with special needs who can benefit from being in the Merry Muscles but are too big to fit in the infant model or have outgrown the infant model.

*Child's weight is supported by buttocks and upper thighs, without pressure on any vital organs.
*Merry Muscles cradles the hips, preventing the child from bouncing with stiff legs and eliminating the possibility of bone or joint injuries caused by impact.
*Back section offers full spine and head support, front bib prevents child from falling forward, or getting tangled in lines.
*Soft fabric seat won't cut into legs.
*Child can exercise or just sit back and relax in comfort.

Merry Muscles is set at the correct angle to allow child to bounce using the soles of his feet (not tip-toes). Designed by an occupational therapist.

Which size to get? To fit this medium size Merry Muscles, the child should measure 27 inches or less from the top of the head to the seat when seated on a chair. (If the child measures 21" or less from head to seat, he/she will fit the infant size Merry Muscles. If the child measures more than 27" from head to seat, he/she will need a Large size--contact us for details.)

Comes with screw-in hook to hang from doorframe or ceiling. Can be suspended from ceiling or door frame. Comes with enough chain to fit up to a 9 ft ceiling. If your ceiling is more than 9 feet tall, extra-long chain can be supplied upon request.
NOTE: The special needs Merry Muscles are made on a by-order basis. Please allow 2-4 weeks for shipping.

Please consult your child's physical therapist before using the special needs Merry Muscles.

Monday, December 3, 2012

BUZZ: Happy 11th Birthday!!

December 3: International Day of People with Disability

This year is the 20th anniversary of International Day of People with Disability (IDPwD), a United Nations sanctioned day that aims to promote an understanding of people with disability and encourage support for their dignity, rights and well-being. The day seeks to increase awareness of the benefits of the integration of people with disability in every aspect of political, social, economic and cultural life.
IDPwD brings together individuals, businesses, community organisations, and governments from every corner of the world to celebrate and acknowledge the contributions, skills and achievements of people with disability.

From the United Nations Website:

Over one billion people, or approximately 15 per cent of the world’s population, live with some form of disability.

Persons with disabilities, “the world’s largest minority”, often face barriers to participation in all aspects of society. Barriers can take a variety of forms, including those relating to the physical environment or to information and communications technology (ICT), or those resulting from legislation or policy, or from societal attitudes or discrimination. The result is that persons with disabilities do not have equal access to society or services, including education, employment, health care, transportation, political participation or justice.
Evidence and experience shows that when barriers to their inclusion are removed and persons with disabilities are empowered to participate fully in societal life, their entire community benefits. Barriers faced by persons with disabilities are, therefore, a detriment to society as a whole, and accessibility is necessary to achieve progress and development for all.

The Convention on the Rights of Persons with Disabilities (CRPD) recognizes that the existence of barriers constitutes a central component of disability. Under the Convention, disability is an evolving concept that “results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.”

Accessibility and inclusion of persons with disabilities are fundamental rights recognized by the CRPD and are not only objectives, but also pre-requisites for the enjoyment of other rights. The CRPD (Article 9, accessibility) seeks to enable persons with disabilities to live independently and participate fully in all aspects of life and development. It calls upon States Parties to take appropriate measures to ensure that persons with disabilities have access to all aspects of society, on an equal basis with others, as well as to identify and eliminate obstacles and barriers to accessibility.

In spite of this, in many parts of the world today, lack of awareness and understanding of accessibility as a cross-cutting development issue remains an obstacle to the achievement of progress and development through the Millennium Development Goals, as well as other internationally agreed outcomes for all.
The commemoration of International Day of Persons with Disabilities in 2012 provides an opportunity to address this exclusion by focusing on promoting accessibility and removing all types of barriers in society.

How the Day may be observed

Based on the main theme of IDPD 2012 “Removing barriers to create an inclusive and accessible society for all”, sub-themes can be selected to cover all aspects of society and development, including, but not limited to, removing barriers to education, employment, transportation, travel and tourism or sports. You can select a sub-theme to address a specific issue of exclusion and accessibility in your community.

Include: Observance of the Day provides opportunities for participation by all stakeholders – Governments, the UN system, civil society and organizations of persons with disabilities – to focus on issues related to the removal of barriers to create an inclusive and accessible society that would benefit all.

Organize: Hold forums, public discussions and information campaigns in support of the themes of IDPD 2012 to find innovative ways and means by which barriers to the inclusion of persons with disabilities and their families can be broken down.

Celebrate: Plan and organize performances everywhere to showcase - and celebrate - the contributions made by persons with disabilities as agents of change and development in the communities in which they live.

Take Action: A major focus of the Day is practical action that would help to remove barriers that limit accessibility for and participation by persons with disabilities in all aspects of society and development.  Highlight progress and obstacles in creating accessible and inclusive society, including in terms of physical environments, information and communications technology and other areas, as well as promote public awareness of existing barriers to the full inclusion of persons with disabilities in their societies.

Saturday, December 1, 2012


My apologies in the lack of posts the past few weeks... as most of you know, I (Alicia Harper) am the main author here and founder of Global Hydranencephaly Foundation which maintains this blog in correlation with our nonprofit. The inspiration for GHF is my own son Brayden Alexander & the many children and families we have come to know and love from across the globe. Coined as our little "bees"... these children are the most joy-filled, loving children I've ever known.

On November 15, Brayden joined his angel friends when his little body just couldn't overcome the cold he had been battling. He died at home after myself and the EMTs could not revive him around 12:30... 
Devastating does not describe the days we have faced since that Thursday a little over 3 weeks ago. The sadness is starting to turn to a passionate fuel for the foundation, which I've always had but now have in a different, incredibly more dedicated way. This foundation is my own little man's namesake and I will be sure his light continues to shine through our mission.

The foundation is not all about Brayden, simply inspired by the strength and determination he demonstrated throughout his life of defying all odds set against him... it is about the 1 in 10,000 pregnancies across the world that will be affected by the oftentimes unheard of diagnosis of hydranenephaly. It is about the parents who will be encouraged to terminate the pregnancy upon diagnosis, because hydranencephaly is currently deemed a condition "incompatible with life". It is about those parents who refuse to accept that there is no hope for their child and seek out more information and guidance to provide their children with the best quality of life possible. It is about those parents who love their children enough to look for adoption as an option for their child instead of advised termination, once the small list of expectations and fear of the unknowns is delivered. It is about those children who are not without limitations, but who fight with a smile to live life to its fullest...  

And when those of you reading this feel as if there is not possibly ONE thing you can do to help change the many misconceptions that exist surrounding a diagnosis of hydranencephaly... you're right! There are actually MANY ways you can help, but the easiest is simply by educating yourself on hydranencephaly through our website and through asking specific questions. Education is power. That power can save a child's life by giving  hope to a parent who has had it all stripped away by the person they trust the most to care for their child, a doctor. 

Seek us out on Facebook, Twitter, YouTube, our websites, and of course subscribe to our blog via email so you never miss a post... because they will be coming daily, if not more often! Should you ever meet a family whose life has been touched by hydranencephaly, please do not hesitate to put them in direct contact with me via email or phone. 

We also accept donations via PayPal or check (see our website for details), which are used to support our families in whatever capacity they need as well as provide printable resources and awareness merchandise: most currently in planning the first ever Hydranencephaly Foundation Conference in Dallas, Texas in June 2013.