Thursday, April 25, 2013

Thought-Filled Thursday: Volunteer Appreciation Week

When our organization was in it's earliest days of planning, and after I'd invited some individuals on to the board of directors, I had a few very rough ideas of what I wanted in a name and in a logo. I happened to stumble upon my notebook of brainstorming this morning and wanted to share the main points:

  • B is for Brayden, Believe in the Impossibilities, and Bumblebee
  • "Aerodynamically, the bumble be shouldn't be able to fly, but the bumble bee doesn't know it so it goes on flying anyway." ~Mary Kay Ash (and the reason for the included bumble bee above)
  • a heart tree... I have multiple images with trees/branches having heart leaves doodled. To me the image represented love, support, and growth. All of which I wanted the foundation, or whatever it was to become, to represent. Our first logo incorporated branches with heart leaves... which eventually dissolved to incorporate our "global" entity.
  • foundation must be long-term, a way for Brayden's light to continue shining long after he had left this earth (little did I know it would be sooner than later)
Some of those earliest thoughts still exist in our mission today... Brayden's light is surely still shining on, the word "impossibilites" turned to simply "the impossible" for grammatical fluency, and our bumblebee was so kindly developed in to our very own Bennett Buzz-bee, with muscles to represent strength and a little crooked smile to represent the same characteristic many of our little bees possess. The Mary Kay Ash quote remains as our mantra, that our little ones do not live by predetermined expectations, but instead by their own determination and a support team that believes in whatever it is they wish to do and accomplish. The heart tree image has left... but the concept and emotion behind the image still exists, especially in our support network for families.

The Family-to-Family Resource Network, which is found on Facebook and closed to include families and care providers exclusively, is far more than a typical support group for chatting business and offering advice. I have been, and am still, part of several various support groups on various topics... but this one is far different, and I'm not solely basing that statement on pure bias. Here families have merged in to one greater family, a network of strength that lifts their members up and keeps them afloat when they need it the most.  Families share photos and stories of both defeat and of celebration. When one child is ill, they all gather keep one another close in positive thoughts & prayer. When one child joins the angels, they all feel the sadness and loss. Sometimes they all do not agree and disagreements may ensue while passion and tension runs high... but in the end, they are still a family of support that includes aunts, uncles, grandparents, siblings, and others who are directly associated in the care & support of a little bee. 

So this week, in celebration of National Volunteer Appreciation Week, we thank all of our participating families who have reached out to share their lives and allowed another to walk beside them on their journey, in whichever leg of the journey they are on. Our families are the ultimate driving force behind our mission, our number one focus and the reason we exist and continue to expand. Some times it seems as if the mission is a meaningless one, as we are ultimately unable to change the fate of the diagnosis we represent, but paving the way for other families to have a reason to believe in something besides that long list of "impossibilities" has been a charity in itself. 

Friday, April 19, 2013

Fact-BUZZ Friday; Emotions

Various parts of the brain work together to control emotion.. not only the feelings you feel, but the response to those feelings as well. Let me start by reminding you all that I'm not a medical professional whatsoever... the information here is a pool of information I've read and there are always differing ideas and concepts, including information which is completely opposite of what I may write here. I'll try to keep the details vague so it simply gives you a general idea of what is what and it's job... in reality, no one knows for sure which parts of the brain do what or how they function. If you question that notion, explain how a child with an empty MRI scan can live a quality life for many years (hydranencephaly dispels many medical theories & textbook definitions). 

So, here's the brain from the outside:
image courtesy of
Inside of those parts that you see above is the limbic system, deep in the center (actually inside the brain you see above is two more "brains" but I'll refrain from confusing the issue further and stick with the basics). It actually may be intact in children with hydranencephaly (it's hard to say for sure since the brain is such a complex, complicated organ to map) and my theory is that both "inner" brains are oftentimes fully intact and functional, aside from some more severe cases of hydranencephaly where greater damage is apparent through lacking cerebellum or brain stem malformation. Back to the topic: that is the area thought to control an individual's emotional state. Around the deep limbic system is the basal ganglia, which controls emotional response... when you jump in response to startle, cry when you're sad, laugh when something is funny, you get the picture. Our kids don't always display a correct response to stimulations, but they oftentimes do... other times it may be an exaggerated response, especially apparent with the startle reflex often mistaken for seizures!

deep limbic system, image courtesy of

The area to the left, which is actually the front of the brain, is the frontal lobe. This part is generally non-existent in hydrancephalic children. This part's job in the realm of emotion is to control response to emotion... since this is most absent in children with hydranencephaly, it could explain why many parents report their children laughing inappropriately at say... babies crying! I'm not an expert, only done extensive research, but it's a thought. Between the frontal lobes is the ACG, which controls how "easy-going" your emotions are. Since many children are pretty laid back but not really keen on changing things up or a mess in schedule, the absence of this part may prevent control over level-headed emotions.

Those temporal lobes are located behind the ear area, and are responsible for recognition of objects and emotional stability. Some kids have a keen sense of object recognition, others not so much... but MOST do recognize their surroundings and the people they love over strangers. Their response may not be that of a typical child, but they clearly display a difference in emotion on their own level. Example: Brayden would become extremely rigid and his breathing would speed up if held by someone he wasn't familiar with... also, if a stranger patted his hand, even lovingly to say hello, he would yank his hand back and yell at them! 

“Everybody is a genius. 
But if you judge a fish by its ability to climb a tree, 
it will live its whole life believing that it is stupid.” 
~Albert Einstein

Those of you who have a little "bee" in your life know very well how emotional they can be... they laugh, they cry, the smile, they "talk", they speak their emotions through their body language... as far as not showing emotion, FICTION! 

I know you all may have a little person in your life who is defying all odds by living an amazing little life. Share your stories here, or find us on Facebook at And remember, we always welcome your stories and submissions to our YouTube channel, facebook page, blog, or website. If you have anything you'd like to contribute, email it to me at

Thursday, April 18, 2013

Thought-filled Thursday: A Parent's Fight

Sure, the following article isn't about hydranencephaly but another devastating diagnosis called SMA... the article is about what's important and why it is. The article will go in to a bit about SMA, but what is most important about the story is this:

"Some mothers are weak, sure, but the vast majority fight for their children, especially when those children are defenseless. It’s not because they’re trying to be heroes. It’s because that’s their job."

Us parents, we aren't heroes and those who claim to be are likely labeled so for all the wrong reasons... because those who truly are, don't want to be labeled. (make sense??) We fight because it is our job. We fight because no one else will. We fight because we believe in our little loved ones, even when it's dark and no one else does... and fight we do, against those who see things like this:

"You’re going to die soon, poor thing. Here’s a nice, quiet room and some morphine to ease the pain.

They don’t proactively hold you back, no, but they don’t expect you to succeed either." 

Just as the story below tells, children who defy miraculous odds do it because they: 1) are superheroes themselves and 2) have an amazing support team fighting for them. I always say that a child given a terminal prognosis can live a quality of life worth living, with the support and guidance of loving caregivers to encourage and support them. If the child is treated as if he/she will die... they will. They will live, sure, but it will not be filled with life. Instead, treat your child as if they'll live forever! The joy (yes, there is joy even after loss) in having a child that you very well know won't, is in knowing that you have to recognize and appreciate every single moment as if it is the last... because it very well could be. If you don't recognize that, then all I can do is say I'm sorry for the blindness you are living in. 

"You have to be a warrior. You have to attack with the madness of a mother whose child is surrounded by an army of predators."

So, on those days where you've had it up to "there" with doctors and therapists and insurance companies who control your child's destiny... don't give up! You are doing something to change the world, you are giving your child a chance at the life they deserve and everything they achieve is because of you. Even in the face of adversity, during the baby steps and the steps backwards, and feelings of sheer and utter hopelessness... you are amazing and your child knows that and lives that. Don't allow guilt and dread and sorrow to overshadow the wonderful things have done and continue to do.

By Jonathan Morrow

The doctor cleared his throat. “I’m sorry, but I have bad news.”
He paused, looking down at the floor. He looked back up at her. He started to say something and then stopped, looking back down at the floor.

That’s when Pat began to cry.
She’d argued with herself about even coming to the doctor’s office. Her baby was a year old, and he hadn’t started crawling yet. He tried, yes, dragging his legs behind him as he struggled to make it just a few feet on the floor, but it didn’t look right. Everyone told her that she was worrying over nothing, and maybe she was, but she told herself that she would take him to the doctor, just to be safe . . .
“Your son has a neuromuscular disorder called Spinal Muscular Atrophy,” the doctor said. 

“It’s a form of muscular dystrophy that primarily affects children.”
Pat was speechless. Everyone had told her she was silly. She had hoped she was wrong, prayed she was wrong, but still . . . she knew.
“What’s going to happen to him?” she managed to say.
“Where most children grow stronger as they get older, your son is going to get weaker. He’ll lose the ability to move. He’ll lose the ability to breathe on his own. And one day, he’ll catch an infection that will spread into his respiratory system, giving him severe pneumonia . . .”
She held up her hand to stop him. “You’re saying he is going to die?”
He nodded. “There are three types of SMA. Caught this early, your son almost certainly has Type I. Most children with Type I die of pneumonia before the age of two.” He paused. “I’m sorry.”
Pat looked up into his face and saw that he really was sorry. It made her angry. Not because of his pity, but because in this man’s eyes, her baby was already dead.
“Don’t be sorry,” Pat said, wiping tears away from her face. Her voice was suddenly very calm.”He isn’t going to die.”
“It’s important you understand the situation, Mrs. Morrow. The pneumonia . . . he won’t be able to fight it.”
“He won’t have to,” she said. “I’ll fight it for him.”
The miracle of mothers

Over the next 16 years, I had pneumonia 16 times. But I never died. It sounds strange to say it, but my mother wouldn’t let it happen.
She orchestrated a team of more than a dozen doctors. She slept in a chair beside me in the hospital, sometimes for as many as 30 days in a row. She pounded my chest and back every two hours to loosen the mucus, covering my chest and back with bruises.
Today, at 27 years old, I’m one of the oldest people in the world with my type of SMA, and people tell me it’s a miracle. And I agree, it is. But the miracle isn’t just me. It’s a mother who fought like only a mother can to keep me alive.
By “alive,” I don’t mean just “not dead,” either. You’d think my mother would have been satisfied for me to live at home, tucked away from the world where she could protect me, but for her, that wasn’t living. She insisted that I be great.
When my elementary school principal decided that disabled children didn’t have a place in her school, my mom appealed to the school board and turned every board member’s life into a living hell for two years.
She won.
When I wanted to play basketball, she forced an astounded coach to reinvent the rules of the game so that I could be the “ball carrier” for the team, and no one could take the ball away. Not surprisingly, everyone wanted me on their team.
When I could no longer pick up a pencil, she arranged for honors students at local colleges to help me with my homework after school. I graduated at the age of 16, not only near the top of my class, but with college credit.
If you’re a mother, none of these things surprise you. Some mothers are weak, sure, but the vast majority fight for their children, especially when those children are defenseless. It’s not because they’re trying to be heroes. It’s because that’s their job.
And I think we can learn something from them. Not to minimize what mothers do, but I’ve come to believe that our job as writers is not all that different.
Fighting for your ideas

Growing up, I always had to fight to get people to listen to me.
The worst part about being disabled isn’t the pain or the struggle but how the world tries to shove you into a corner and pretend that you don’t exist. After all, what could you possibly have to contribute? You’re going to die soon, poor thing. Here’s a nice, quiet room and some morphine to ease the pain.
They don’t proactively hold you back, no, but they don’t expect you to succeed either. I’ve spent my entire life fighting against the weight of those expectations.
Like when university professors were flabbergasted when, on the first day, I asked my attendant to raise his hand, so I could answer the question that no one else could.
Or the vaguely constipated look on the face of a venture capitalist when I asked for $500,000 of startup capital for my first software company.
Or the disbelieving stares of people at a real estate conference when I gave a talk about buying million-dollar homes without even being able to get up the stairs to see the inside of them.
Their disbelief has never stopped me, of course. It’s not a matter of persistence or strength or attitude, as some people think. It’s a matter of shame.
How could I possibly look my mother and father and all of the others who have sacrificed so much for me in the eye and tell them, “I can’t?” I couldn’t bear it. The shame of dishonoring their sacrifice by giving up would poison my soul.
And so I fight

If my mother could ignore a doctor who would condemn me to death, then I can ignore my inner demons who tell me I’ll never make it as a writer.
If my mother could demand that I achieve straight As in school, then I can demand greatness from every blog post I publish.
If my mother could lobby school administrators and government agencies to get me the help I needed, then I can lobby bloggers and social media power users to get my idea the attention it deserves.
Not to imply that I’m unique, because I’m not. Yes, I’ve had to overcome a lot of adversity, but so does every creative person who wants their ideas to see the light of day.
If you want to succeed, you can’t wait for the world to give you attention the way a cripple waits for food stamps to arrive in the mail. You have to be a warrior. You have to attack with the madness of a mother whose child is surrounded by an army of predators.
Because, let’s face it, your ideas are your children. Their future is as tender and delicate as that of any newborn.
You can’t just write them down and expect them to succeed. Writing isn’t about putting words on the page, any more than being a parent is about the act of conception. It’s about breathing life into something and then working to make sure that life becomes something beautiful.
That means spending ten hours on a post, instead of 30 minutes.
That means writing a guest post every week, instead of one every few months.
That means asking for links without any shame or reservation, not because you lack humility, but because you know down to the depths of your soul that what you’ve done is good.
You have to realize that your blog is more than just a collection of ones and zeros floating through cyberspace. It’s more than the words on the page. Your blog is a launchpad for your ideas, and you are the rocket fuel that lifts them off the ground.
So burn it up, baby.
Your ideas are counting on you.

Tuesday, April 16, 2013

Toy-FULL Tuesday: Jingle Bells... all year round!

Today's post comes from hydran-mommy to Chrissy AND Sophie, and other amazing and wonderful kids, who also happens to be the treasurer & marketing director for GHF. (she's one busy, and GREATLY APPRECIATED, lady!!) Thanks Angela!


These musical bells are one of Chrissy's favorite toys! She loves them so much, and will hit her switch and hold it down for a long time to listen to them play. She was first introduced to the musical bells by a therapist in her ECI program when she was just a little thing. But we could never afford to buy her a set of her own. Holly Fielder Bowers, another mom on our hydran support group sent this set to us a few years ago. 

These bells were also one of her daughter Kirsten's favorite toys. After Kirsten earned her angel wings, Holly wanted Chrissy to have the bells. We had to wait a while, because her sweet son Noah, was attached to the bells, remembering them as one of his sister's favorites! 
Once Noah was okay with sending them to Chrissy, Holly sent them our way! We want Holly and Noah to know how much they mean to us to this day! Every time Chrissy plays with them and has a beautiful smile on her face while she does, we think of Kirsten! 

This is a shining example of the love our hydran families have for one another and for each other's children!

Sunday, April 7, 2013

Bee-Worthy Share: Perfectly Perfect in Every Way

The following post comes from angel bee-beauty Ailish's mom, Tricia. I'm sure you all have seen the photo circulated around the web, as I believe this to be about the third time it  has made the rounds. Most love the sentiment behind it, but I was enlightened by Tricia's perspective and agree on many accounts. What are your thoughts? 

Take this for what it's worth

This picture is circulating all through my facebook today.  People are loving it!  They are inspired by it. I am offended by it.

I am offended based on the idea that by my child being profoundly disabled was imperfect.  That only in dying and going to where we assume is Heaven is she whole.

I thought that God made us all in his own image.  That would mean that God is white, black, Asian, First Nations, gay, straight, disabled, able bodied etc etc.  Why then is it that when a person with disabilities dies that we consider them healed?  We say they are free to run, skip and jump without the encumbrances of what their lot in life was here on earth.  From my perspective my child had nothing that needed 'healing'.

It bothers me no end that anyone would consider that Ailish or any one of my children is less than in the context of God and Heaven.  Everyone knows that those with disabilities are considered dredges of society with little to nothing to offer and to be pitied.  To then insinuate that God sees them as such by depicting and even stating bluntly that no longer are they trapped in their horrible bodies for me (and I only speak for me) repugnant.

Ailish, in her body that she had little to no voluntary control over epitomized what it is to be holy.  The light that shone from her particularly when she smiled and laughed drew people to her.  Her life was one of purity and innocence.  It was impossible for her to commit sin and not because she couldn't move but because sin had no way in.  Ailish knew none of the evils of the world.  What Ailish did know was happiness.  She was happy herself but instilled happiness in others.  She knew love.  All she experienced in her short lifetime was love and it emanated from her every pore transferring to everyone in her presence.  Ailish knew gratitude...what it meant to be grateful and show it.  She knew when her needs were met no matter what time of day that giving a smile, a coo or any signal that what you did to assist her was effective that you would know she was thankful.  Ailish knew what it was to be satisfied and what was enough.  How many of you can say that?  Ailish was not always on a quest for more of anything.  She was content with what she had.  Ailish knew joy.  She could find it in the smallest of things such as a toy chick peeping or God help her, my singing and she found joy every day.

I think in all that I have described it has to be clear that Ailish was perfection.  She was and had almost everything that so many of us strive for all of our lives.  No she did not have a body typical to the norm...far from it.  Her language was not made of words or gestures or even eye gazes but came straight from her heart.  Ailish did not even possess the most critical of organs that doctors have often described as necessary to be human yet she brought out the best in humanity.  Understandably children and adults such as Ailish and the majority of my others will require care all of their lives and the financial support of local and provincial governments and will not put money back into the coffers.  What they have to offer society however is contributory in its own right and in many ways outshines any financial contribution they could make if able.

This all being said, why would Ailish or my little H should it come sooner than later, or anyone with a disability need to be "healed" or "freed" from who and what they are?  I will give you saying "free from pain"  and I will also agree with free from seizures.  I'm all for that. But from who and what they are, count me out.

I just think that comments such as I have mentioned and then this grave marker (which is beautiful and sweet) imply that instead of being born just as they were supposed to be that the children need to be fixed and that they are more tragic than whole and complete.

I realize my perspective is different from many particularly those who have birthed children with disabilities.  It seems to be the common consensus among parents however that though their grief over the loss of what was 'supposed' to be is on a continuum that they too come to the realization of where perfection and beauty really lie in life.

I understand the grave marker and I know from where in the heart of its designer it came.  I think it's beautiful in its own right.  I believe that is signifies the reaching a place of no pain and suffering and an existence of non compare.  I just have been witness to how it is being interpreted by things I have heard over the years and in losing my own child perceived as suffering.

Differing opinions and thought processes are definitely what make the world go round and make life interesting.  These are mine.

Friday, April 5, 2013

Fact-Buzz Friday: PVS

What is PVS? 

Persistent Vegetative State is defined as "a clinical condition of unawareness of self and environment, in which the patient breathes spontaneously, has a stable circulation, and shows cycles of eye closure and opening [that] may simulate sleep and waking."  reference

Doctors generally leave out the details on hydranencephaly, such as which areas of the brain are affected or what the affected areas of the brain mean for the child. That is good and bad. Bad because it turns out that even the formal diagnosis of hydranencephaly is avoided, simply stated as:

"Your child does not have a brain. They are surviving on only their brainstem which controls involuntary functions such as breathing, blinking, and some reflexive-like movements. They will live for a little while in a persistent vegetative state." 

(that's usually followed up by some unethical opinion of what the parents should now do for their child, which is generally not much)

Good because when doctors leave out those details, they are not placing inaccurate expectations for the child's life (or more likely, adding to that long list of impossibilities that come along with diagnosis). 

You may have heard of PVS during the case of Terri Schiavo, the woman who experienced a heart attack-like episode in 1990 and went in to a coma which later was deemed a persistent vegetative state. There was a battle between her family & her husband whether to remove necessary equipment such as her feeding tube. The government was involved and eventually she passed away due to dehydration after more than 13 days without nutrition or hydration in 2005. This case happened years before I myself embarked on this journey with hydranencephaly, but it had a huge impact on me. You can learn more and support the foundation, which is working to change the misconceptions that surround a diagnosis of PVS, in her name here: Terri Shiavo Life & Hope Network

The truth is, our kids living with hydranencephaly are not in this state of awareness. Some defined symptoms of PVS include:

  • ~unresponsiveness to external stimuli
  • ~varying levels of consciousness
  • ~eyes remain is relatively fixed position, sometimes able to track moving objects but not consistently
  • ~may experience inconsistent sleep-wake cycles, or pursue a state of chronic wakefulness
  • ~exhibit some involuntary behaviors that exhibit signs of partial consciousness such as: teeth grinding, swallowing, smiling, shedding tears, grunting and other vocal sounds without language
  • ~not dependent upon life-sustaining equipment other than a possible feeding tube when the brainstem is intact (some children with hydranencephaly do not have the brainstem)

and if you have a little one with hydranencephaly in your life, you know that these symptoms are not accurate descriptions of the child. 

  • ~The children are responsive to stimuli, which is encouraged and expanded upon with therapies. 
  • ~They are conscious of their surroundings and the people in them. While they may not recognize the minute details, they respond to negative situations, strangers, people they love, and show preference for specific activities and people. 
  • ~sleep-wake cycles are generally inconsistent in most children in infancy. While sleep often does continue to be a challenge for children with hydranencephaly, this is more likely due to damage to the hypothalus which regulates the body's circadian rhythym... not PVS.
  • ~Children with hydranencephaly instead exhibit MANY signs of purposeful movement and even language skills. Their abilities, like their responses to stimuli, can be encouraged to grow with therapy. Most of the children smile a characteristic "elvis-grin" which is pure joy! Tears are shed when they're sad or mad, they're crying, not just spontaneously but in response to negative stimuli. Teeth grinding is common, but can also be attributed to seizures or the areas of damage within the brain.
  • ~life-sustaining equipment is a rarity... though some would argue that equipment our children DO use is considered extreme life-saving measures, but I instead believe them to be life quality-enhancing measures: feeding tube, tracheotomy, brain shunt placement, and oxygen use.

This is quite the controversial topic, and while I have my personal views on the diagnosis itself, it is a difficult fog of a condition to navigate. Misdiagnosis is not uncommon since it is difficult to evaluate activity within the brain, even with advances in imaging technology such as functional MRI and PET scans. And the determination of level of consciousness, along with brain function and response, is next to impossible. 

However, it is without a doubt that the phrase persistent vegetative state is not one that should be used to define children with hydranencephaly. 

Thursday, April 4, 2013

Thoughtful Thursday: Bee-Inspired

Just so you know, our Facebook page has a TON of great bee-isms (our clever name for inspirational quotes featuring our little "bees") and timeline headers, like the one above, for your very own personal use... just please don't edit them in anyway, especially if you use one with a photo of a child in it. We will find you ;) Check it out HERE. You won't be disappointed!

Tuesday, April 2, 2013

Toy-FULL Tuesday: Get out and ROLL!

The birds are chirping, the grass is looking greener, and the trees are a little less naked... spring is in the air! And getting outdoors and enjoying some fresh air is exactly what everyone needs after being cooped up indoors battling bugs and boredom.

Why not go biking?

Seems a little unfeasible with a child who is non-ambulatory, huh?

Not impossible, however... remember our motto: "Believe in the Impossible"

It's true... maybe a little more challenging, or necessary of a little more creativity or time... but not impossible. And not only is it a great way to enjoy the outdoors, but a FUN way to sneak in a little therapy as well ;)

Check this out:

That fancy contraption is The Duet and one of my most favorite inventions for the special needs community since it can be used for children up to adults!!  Their website even shares THIS PDF for raising funds to acquire the one and only Duet Wheelchair Bicycle Tandem. Let us know if you manage to get your bottom in the seat of one of these... but be sure you wear a helmet (I'm a little concerned that the above picture, from their website, does not show the biker or passenger with helmets! eeeK!)

May not be suitable for littler loves... like many of our little "bees" who are toddler to preteen in majority. Have no fear, there are solutions for them too! I know most of you have seen the roll-behind bicycle trailers, so I'll save a little time by just letting you know that is a great option... set a child's tumbleform/feeder seat in the seatbelt and you're ready to roll! And just a tip, your roll will be smoother if the tires are rubber and fatter than the average bike tires!

Some other options for little people include (click the links under the pics to check out the websites for more details):
Trailmate Double Joyrider
Trailmate Double Joyrider
Rifton Adaptive Tricycles
The Rifton Adaptive Tricycles

Freedom Concepts Adventure Tandem
The Adventurer Tandem
Kettler Air Navigator
the Kettrike Happy Navigator Air

You can also check out Toys-R-Us (be sure to sign up with, download the toolbar button, and donate to Global Hydranencephaly Foundation for purchases online without a second of extra effort... there are thousands of other stores to purchase and donate from as well!):

and you can score this inexpensive alternative to typical adapted trikes that carry the label "for special  needs" and an automatic heftier price tag:

3 Wheel Ride on Fun
They have a few options similar to the one above, find all tricycles HERE

And my personal favorite are the Amtryke adapted tricycles from AMBUCS, since they're a great personable company and help with fundraising to achieve this mode of mobility for your little person. My own little man, Brayden, had actually just received his... but sadly was never able to give a roll before being called on his mission to heaven. SO, it will be up for bid in our silent auction at our Summer of Success: Global Hydranencephaly Foundation Conference in Dallas, Texas June 14-16. Check out details  HERE and get your rooms booked, flight tickets purchased, and tickets paid for to attend... it will be a grand event that you will not want to miss!!