To help samuel do his bucket list why he is still able to!!!
Heartbreakingly 7yr old Samual was diagnosed at just 14 months with a terminal disease - duchenne muscular dystrophy. Duchenne’s is a progressive muscle wasting disease and sadly Samuel has an incredibly fast progression Duchenne’s. Most don’t go into wheelchairs until late teens, Samuel was 14 months!
6 months after diagnosis Samuel lost the ability to eat and drink & walking was hard.
By 2 years old he was tube fed, and gained his first power wheelchair. By 4 years old he was on a breathing machine every night.
In the last 4yrs we have tried steroids to help prolong Samuel's muscles but unfortunately it has not helped.
Reality for us it is each day is about making memories and family time. In the last 6mth samuel has declined so much that even holding his head up unaided is now hard for him what strength he does have left is such short bursts now!!!
Some of sam lists is:
Going on a train thru the mountains
Going on a ferris wheel
Going to see snow
Going to see dolphins etc
Samuel is also needing a cough assist machine, this is not funded and essential for lung health. He doesn’t have the strength in his muscles to cough well enough independently.
Doctors have said there is nothing else they can offer to help with the slowing of the progressive of his condition. We need to make memories while our gorgeous boy is still with us.
Thank you for reading this far and for supporting us on this journey we never imagined we’d be on.
Please appreciate how hard it is asking for financial help, it is not easy xx
I'm his mother and I will do all possible to make sure his bucket list gets some ticks on it
All funds will be used to tick off samuel bucket list why he still can!!!
Ferris wheel, Train thru mountains, Go see snow, go see dolphins etc....
Family holiday 1 October 2020
In April 2021 we are planning a family trip to explore the south island places and tick off some more Sam wishes along the way.
But to make this happen for him we are going to need to get a battery for his bipap and some other things to make this happen for him and his siblings so we are going to need as much help as we can get todo this thank you all who have supported us so far and made some of his wishes happen so far!!