Jesse Vincent-Ellis, 19, remains in St Vincent's Hospital after undergoing a heart transplant.
Jesse Vincent-Ellis, 19, remains in St Vincent's Hospital after undergoing a heart transplant. Go Fund Me

Mum torn between bedsides with sons in separate hospitals

AN INCURABLE, rare disease has left two brothers hospitalised 500-kilometres apart and their mother torn between their bedsides, as she contemplates her own health condition.

Chrissy Vincent and her two teenage sons Jesse and Jake from Valla Beach have endured an incredibly tough two-years of their lives.

Chrissy and the boys were diagnosed with a rare form of muscular dystrophy called Danon disease causing lethal cardiomyopathy.

Doctors say there is no one cure for this disease and the local mother and her two boys will each require ongoing and lifelong medical treatment.

After waiting 18-months for a heart transplant, Jesse, 19, was airlifted to Sydney's St Vincent's Hospital in October where he underwent surgery in February.

After his own diagnosis with the disease Jake, 13, who also has Asperger's syndrome, was hospitalised near home due to severe osteoporosis, which has caused his vertebrae to fracture.

 

Chrissy Vincent, who is also beginning to show signs of the disease, is working to create awareness and educate others on organ donation.
Chrissy Vincent, who is also beginning to show signs of the disease, is working to create awareness and educate others on organ donation. contributed

Jake now requires intensive paediatric physio, while Chrissy is currently in Sydney supporting Jesse following his heart transplant.

Family friend Amy Cosgrove, who is fundraising for the family, to help Chrissy modify her house ahead of Jake's return home, said Chrissy is also dealing with her own medical complications.

"Chrissy has been completely selfless in her care and concern for her boys," Amy said.

"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."

 

Jake Vincent-Ellis has been hospitalised due to severe osteoporosis, causing his vertebrae to fracture.
Jake Vincent-Ellis has been hospitalised due to severe osteoporosis, causing his vertebrae to fracture. Contributed

"The infusions he is having as part of his treatment cause significant side effects and he has been crying for his mum," Amy explained.

"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," she said.

Modifications to the home will be necessary to allow Jake to move about in safety and to offer him independence.

Future mobility equipment needs may include a walker and possibly a wheelchair.

"To add to this a roof issue causing leakage and damage requires urgent repairs," Amy said.

"The boys have been the priority the last six months, but this issue needs urgent attention.

"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," she said.

A Go Fund Me campaign carrying a target of $20,000 has so far raised around $3,000.



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