Rhys is our handsome, brave, and resilient 5 year old boy and we are asking for help to get him the specialised wheelchair he needs. Rhys was home from school recently as we didn't have a wheelchair and using his walker while at school for the 2 hours is too much for his little body, his muscles were exhausted. He was falling more than usual and injuring himself a lot, even though after being at school for 2 hours he would come home and sleep for 3. As I was tucking him into bed he said to me 'I want to be at school mummy, why don't my legs work like my friends?'. This was the hardest thing I have ever heard him say, how can I protect him from feeling this way?. We have been trying to find funding for a wheelchair with no success but he was hurting and through no fault of his own. So this was the moment we decided something needed to be done as I rang around and found a wheelchair for hire. So here we are, trying to raise enough funds to purchase him one with extra accessories so it has everything he needs. We are currently hiring one but it doesn't meet all of his needs and isn't something we can do long term.
Rhys has degenerative congenital myopathy, a deteriorating muscle disease which impacts most aspects of his life. Everyday Rhys battles horrible fatigue due to all his muscles being weak and not contracting as they are meant to, causing him to struggle just to hold his head up at times or sit without full support. His joints over extend meaning simply standing is so much harder and his legs and arms give out randomly. He is so tired most days he is unable to swallow or chew food, so he has his dinner via his ‘tubey’.
Rhys’ mobilities struggles unfortunately cause him to fall down A LOT. He is normally so resilient and once helped back up will carry on going, however this has all changed... Due to his fatigue and mobility deterioration it has been recommended by various medical professionals (including his teams at both starship and Tauranga hospital) for him to begin utilising a wheelchair as a preventative for his fatigue and also to support him in the best way in the future. The wheelchair requires specialised equipment such as head support, a tilting feature (for when he is struggling to hold his head up), and trunk support, among other things. And comes at an unbelievable 15 thousand dollars price, which we just cannot afford in our situation.
Rhys has started going to school only 2 hours and 15 minutes a day and although he has a teacher aide support at school it has caused a significant deterioration in his mobility. He often doesn't make it to school 5 days a week due to being too tired to even sit or stand let alone walk at times. This is a huge shame as mentally he is on par with his peers and doesn't understand why his body won't keep up. His falls have become much more frequent, and he is injuring himself a lot more. We desperately need a specialised wheelchair for him so he is able to attend and experience school more to grow and develop with his peers. He currently wears a helmet, ankle supports, a belly band to help engage his stomach muscles, and uses a walking frame to get around. Even walking from the car to his class, a distance of no more than 50 metres, will leave him exhausted.
Although a wheelchair will be a life changer at school it would also be a blessing in the home Currently day to day tasks with Rhys are extremely difficult due to his fatigue. Something as simple as bathing or getting dressed tires him, so being able to move him around the house without relying on his mobility or someone trying to carry him would be amazing. It would also mean the family would be able to take him on outings in the community such as feeding the ducks, going to the shops, or even the zoo, which currently isn't something we are able to do often.
Rhys’ dad works extremely hard and long hours to provide for his family and due to the short time Rhys is at school and various medical or therapy appointments for Rhys throughout the week his mum is unable to commit to a job at this time. We never thought we would need to ask for help to provide something so important that he needs, however we are not too proud to ask for help when we know it will improve Rhys’ life and opportunities so much.
This is the link to our go fund me page https://givealittle.co.nz/cause/wheels-for-rhys , If there is anyway you can help even if its just sharing our story we would be so grateful!
We can't thank you enough for your support!!!!
Rhys, Rhiannon & Mark.
