The disease causes lethal cardiomyopathy amongst other serious complications. After waiting 18 months Jesse (now 19 years old) was airlifted to St Vincent’s Hospital in Sydney last October to await a heart transplant. Jake (13 years old) has Asperger’s syndrome and Cardiomyopathy also. He was hospitalised late January due to severe osteoporosis which has caused his entire vertebrae to fracture. Jake requires intensive paediatric Physio which our regional health care does not provide. The alternative once Jake is discharged is for the family to fund themselves a rehabilitation program (outside of the hospital) to enable Jake to progress with his mobility that is extremely compromised at present due to pain and intensive rehab required. The infusions he is having as part of his treatment cause significant side effect and he has been crying for his mum.
The good news is that Jesse received his new heart in late February! A further stay of around 2 1/2 months in Sydney once discharged for education and rehabilitation. With both boys requiring hospitalisation, yet in different hospitals 550 kms apart, the family have been separated since last September. Currently Chris, their mum is still in Sydney supporting Jess as he is less than a month into life with his new heart. A permanent escort must remain with Jess during this recovery phase.
This family has already been through more than any should have to endure and yet their journey is far from over. It is important for mum and kids to be together to support one another emotionally whilst coping with this hideous disease.
Modifications to the home will be necessary to allow Jake to move about in safety as well as offer him independence. Future mobility equipment needs include a walker and possibly a wheelchair. To add to this a roof issue causing leakage and damage requires urgent repairs. The boys have been a priority the last 6 months but this issue needs urgent attention. There is still so much travel back and forth to Sydney for both boys for specialists and hospitals in the future. Again this is an ongoing journey for the family.
They’ve asked for nothing (and still ask for nothing!). However the added stress and financial burden is beginning to take its toll. Working to provide an income is now impossible for this family and will continue to be so whilst the boys are in hospitals so far apart, and ongoing appointments with various specialists will mean trips to Sydney for the next few years for both boys.
Jake will also require one on one care for his special needs and current rehabilitation programme.
Chris is dealing with her own share of medical complications from this disease but has been completely selfless in her care and concern for her boys. Two years of spreading herself thin trying desperately to manage is taking its toll.
A special mention too. Chris is tirelessly working to champion & educate around the life giving gift of organ donation along the way. Her strength in doing so whilst dealing with the diagnosis and subsequent medical issues Danon disease has imposed on the family is testimony to her indomitable will. How this woman has coped for so long with everything crashing around her is astounding - yet Chris is the first one to offer support or help if someone else in the community is having a tough time.
We need to show these wonderful people the love and support that the world has for them. It’s time to show our humanity and lend a helping hand, take away some of the extra stresses to lift the spirits of a struggling family who really do need our support.
Jesse's story is shared at Herd for Hope, Bondi Beach
Jakie is bed bound until his spine heals enough and he can begin some physio to get him up and moving again.
Jess received his heart transplant 23rd February
Chris (the boys mother) is also beginning to show signs of the disease. She is working to create awareness and educate others on organ donation.
Jesse is looking amazing and getting stronger everyday. Always the athlete before this journey began- Jess has his sights set on the Australian transplant games in October this year. Keep your eyes out for him because I have no doubt he'll get there and much future beyond too.
(EDIT: GoFundMe has asked me to include some info...
My name is Amy Cosgrove.
I am a friend of this family. My mum and Chrissy worked together for years. I used to baby sit Jakey.
We all come from the mid north coast town Valla Beach.
As mentioned above- money will be used first to cover the roof issues that need fixing. Then to begin the moderations on the house so that Jakey can safely come home again. If there is any money left over from this it will be used for travel costs between Coffs Harbour and Sydney as Chris moves back and forth between her boys.)
- Simone Mori
- Jenny Taylor
- Wendy and Roger Haynes/Sharpe
- Anita Chrismas
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