The parents of the only child in Ireland with a rare form of brain cancer have spoken about their frustration at having to relocate to America to secure the best treatment for her.
John Savage, the father of three-year-old Alisha, asked: “Why do these children have to travel to the other side of the world to find an effective healthcare system to deal with all the aspects of our concerns?”
Alisha’s parents say it was time more research was done in Ireland into paediatric cancers so other families do not have to go to such lengths to give their child the best hope of life.
They have, with Alisha’s younger sister one-year-old Emma-Louise, moved from Cork to Boston for specialist care at the Dana-Farber Institute, where doctors are trying to find a cure.
They are supported by funds raised by family and friends but John also closed up his business to go to America for as long as the treatment takes.
If Alisha goes into remission, the family expect to have to move to New York for treatment that will, hopefully, stop it recurring.
Alisha was given just a 10% survival chance in Ireland when diagnosed in November 2012 with stage IV atypical teratoid rhabdoid tumours (AT/RT), a very aggressive form of cancer. She had surgery and chemotherapy but, when tumours recurred, her family decided to seek help at the Boston centre where she has been given a 50% survival chance.
If she reaches five years of age, chances of survival increase to more than 70%.
The couple highlighted the superior health system in the US but Alisha’s mother, Michelle Long said: “The downside is that it comes at a cost. Thankfully most of the medical bills are being covered by the Ray Tae Medical Foundation who help those with no medical insurance.”
She said to date $30,000 (€21,800) has been spent and a further $45,000 required for the coming year, as well as up to $200,000 for treatment in New York.
Michelle and John said: “Our message to the HSE and the health department is one about the frustration we have. The children of Ireland who are suffering with cancer deserve the best possible treatment available and there should be no financial limits attached to making sure they get the best chance at beating the disease... These children are warriors and they wake up every day to fight it.”
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