Help Henry 'The Hugs' Get Off-Road Wheelie Freedom
Donation protected
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Thanks to everyone's kindness and generosity we smashed the target in just over 24 hours!!! Jo and Chris are overwhelmed with everyone's kindness and Jo is even speechless which doesn't happen often! :)
If you still wish to donate Jo & Chris would love to be able to give back to two local charities. The first one is Thatcham Nursing Society who has pledged up to £2,500 for this chair. They are a small charity so to be in a position where Jo and Chris didn't need all of that would be amazing so that money can be used to support other families. The second one is PALS who support Henry on a weekly basis, again a small charity where the small amounts make a huge difference to local disabled young people.
Please let me introduce Henry 'The Hugs' my awe-inspiring godson!
Henry has an ultra-rare neurometabolic disorder (about 450 cases known worldwide) called SSADH deficiency. For all the science/techie folk please check out the link and full explanation at the bottom of this page!
I could talk all day about how clever and amazing this boy is and how he brings so much joy and happiness to everyone he meets, you just can't help but fall in love with him. He continues to inspire all those around him with his sheer determination to achieve and overcome the many challenges he is faced with.
Importantly though, Henry is now 7 years old and getting big, too big for standard pushchairs and almost too heavy to carry any distance and although blessed with a dedicated and doting family there are now many restrictions for Henry. Simple things like watching his amazing big brother, with whom Henry enjoys a super special bond, play football or rugby is often out of the question due to the rough terrain and family walks are restricted to flat tracks or pavements that his standard wheelchair can cope with and often the family spends weekends doing separate things rather than being together as a complete unit. Add to this Henry is very strong willed. He sees no limitations in his ability and wants as much independence as the next person so managing this is sometimes challenging.
So, after a lot of research, his wonderful Mum Jo, found the Mountain Terrain Trike. Invented by a university student who wanted to give people who couldn't walk the freedom to enjoy the countryside, it's seems to be just what Henry needs. After a test drive at home, Henry LOVED it and cracked the steering and propelling within minutes.
This specialised trike would open up some many opportunities for both Henry and his family to enjoy that most of us take for granted. It's well up for a muddy woodland trail, a trip to the shops, a walk in the park and for the more adventurous, it has even been used to climb the odd mountain or two although I'm not sure Henry is quite up to that yet, but who knows what his plans are?! It also has a funky lever drive system so Henry would be able to propel himself along and keep his hands clean! The trike would need a few safety adaptations for Henry, including a handle at the back so he couldn't zoom off too far, foot raisers and side protectors, but the great news is this trike has a universal sized frame so Henry would never grow out of it so with some regular TLC it would last for years and years and be a great long term investment. However, like most thing none of this is cheap, the total cost is coming in at a whopping £5200 and although Jo has secured funding for part of this it would be wonderful to raise the rest of the funds needed and help Henry on his path to greater independence.
Thank you for taking the time to read this, any support you can offer would be hugely appreciated.
Here's the technical part... Succinic semialdehyde dehydrogenase deficiency (SSADH) is characterised by the lack of one of two enzymes involved in the breakdown of GABA, the major inhibitory neurotransmitter in the brain. GABA controls movement, and when it is imbalanced, neurological abnormalities occur. Commonly this presents itself as delayed fine and gross motor development, mental development, speech and language development and hypotonia. (https://www.ssadh.net/about-the-disorder/)
Thanks to everyone's kindness and generosity we smashed the target in just over 24 hours!!! Jo and Chris are overwhelmed with everyone's kindness and Jo is even speechless which doesn't happen often! :)
If you still wish to donate Jo & Chris would love to be able to give back to two local charities. The first one is Thatcham Nursing Society who has pledged up to £2,500 for this chair. They are a small charity so to be in a position where Jo and Chris didn't need all of that would be amazing so that money can be used to support other families. The second one is PALS who support Henry on a weekly basis, again a small charity where the small amounts make a huge difference to local disabled young people.
Please let me introduce Henry 'The Hugs' my awe-inspiring godson!
Henry has an ultra-rare neurometabolic disorder (about 450 cases known worldwide) called SSADH deficiency. For all the science/techie folk please check out the link and full explanation at the bottom of this page!
I could talk all day about how clever and amazing this boy is and how he brings so much joy and happiness to everyone he meets, you just can't help but fall in love with him. He continues to inspire all those around him with his sheer determination to achieve and overcome the many challenges he is faced with.
Importantly though, Henry is now 7 years old and getting big, too big for standard pushchairs and almost too heavy to carry any distance and although blessed with a dedicated and doting family there are now many restrictions for Henry. Simple things like watching his amazing big brother, with whom Henry enjoys a super special bond, play football or rugby is often out of the question due to the rough terrain and family walks are restricted to flat tracks or pavements that his standard wheelchair can cope with and often the family spends weekends doing separate things rather than being together as a complete unit. Add to this Henry is very strong willed. He sees no limitations in his ability and wants as much independence as the next person so managing this is sometimes challenging.
So, after a lot of research, his wonderful Mum Jo, found the Mountain Terrain Trike. Invented by a university student who wanted to give people who couldn't walk the freedom to enjoy the countryside, it's seems to be just what Henry needs. After a test drive at home, Henry LOVED it and cracked the steering and propelling within minutes.
This specialised trike would open up some many opportunities for both Henry and his family to enjoy that most of us take for granted. It's well up for a muddy woodland trail, a trip to the shops, a walk in the park and for the more adventurous, it has even been used to climb the odd mountain or two although I'm not sure Henry is quite up to that yet, but who knows what his plans are?! It also has a funky lever drive system so Henry would be able to propel himself along and keep his hands clean! The trike would need a few safety adaptations for Henry, including a handle at the back so he couldn't zoom off too far, foot raisers and side protectors, but the great news is this trike has a universal sized frame so Henry would never grow out of it so with some regular TLC it would last for years and years and be a great long term investment. However, like most thing none of this is cheap, the total cost is coming in at a whopping £5200 and although Jo has secured funding for part of this it would be wonderful to raise the rest of the funds needed and help Henry on his path to greater independence.
Thank you for taking the time to read this, any support you can offer would be hugely appreciated.
Here's the technical part... Succinic semialdehyde dehydrogenase deficiency (SSADH) is characterised by the lack of one of two enzymes involved in the breakdown of GABA, the major inhibitory neurotransmitter in the brain. GABA controls movement, and when it is imbalanced, neurological abnormalities occur. Commonly this presents itself as delayed fine and gross motor development, mental development, speech and language development and hypotonia. (https://www.ssadh.net/about-the-disorder/)
Organizer and beneficiary
Helen Winser-Page
Organizer
Joanne West
Beneficiary