Just4Children are wanting to raise funds for essential specialised equipment and assistance and possible home adaptions for Tyler and Eryn.
Tyler and Eryn are 2 children from the Jones family in Devon that have been diagnosed with a very rare degenerative neurological disorder called Hereditary Spastic Paraplegia. They both have Type 5a.
Both Tyler and Eryn, along with their sister Ivy, all attend Sherford Vale School.
When Kat and Simon started their fundraising journey they knew of only 3 other people worldwide to have 5a, they have now found another 24 people making the total including their children 27. Tyler and Eryn are still only 2 of the 4 people in the UK to have this disorder.
It is unknown at present how much more this disorder will affect them and because there are so few cases prognosis is also unknown. Team Jones are trying to raise awareness of this disorder at the same time as raising much needed funds for equipment, possible future house adaptations, which could include an accessible wet room, stair lift and making gardens more accessible and medical essentials that will help to make sure the children can live their lives to the best of their ability and comfortably.
Tyler now has his Assistance Dog, Buddy, Buddy is doing really well and his training is progressing, however with the good comes bad and sadly Tyler has recently been measured up for a wheelchair to enable his little body to cope with extended periods of time out with his family and friends and also for longer distance walks. He is beginning to tire a lot quicker and this is having a detrimental effect on the amount of falls he has.
Your generosity is very gratefully received, and as always we shall keep you updated.