Mum of tragic boy (4) with rare disease struggles to raise €10k for necessary treatment
Published 30/07/2014 | 13:05
Adam Conlon(4) has a rare condition called 'Mowat-Wilson Syndrome' - one of only 147 cases in the world.
Adam is the 'worst case on record' of the 147 across the world and he needs full-time care.
Adam's mother, Rebecca, is trying to raise €10,000 for a 'house adaption' to meet his needs. The required equipment includes wheelchair ramps, as Adam cannot walk, and 'sterile bathing facilities' which are required to avoid infection.
Rebecca applied for the house adaptation grant over three years ago but only received approval recently. As part of this process, a surveyor was called to the house to assess the cost of the works and he estimated the cost at over €30,000 - €19,000 more than the grant will cover.
Adam currently must be fed through a tube. He has open wounds as a result of a condition deterioration last January and suffers night-time seizures.
Adam was born in 2010 with a a twisted bowl and a heart irregularity - his heart was beating too fast. His parents were told he 'probably wouldn't survive' the trip to Temple Street Children's Hospital in Dublin and advised to say their goodbyes.
He was eventually diagnosed with 'Mowat-Wilson Syndrome' - the worst case on record in the world. Mowat Wilson Syndrome is a defect in the DNA strand which affects the major areas of the body - in particular the heart, brain, bowel and eyes. Normally the sydrome would present itself in one of these areas but Adam suffers from severe medical issues in all of them. He spent his first year in Temple Street Hospital.
In early 2011 nurses noticed something amiss with Adam's father, Joe. Following an MRI scan Joe was diagnosed with a grade 4 Glioblastoma Multiform Tumour - a brain tumour too large to be removed. He was given 12 months to live. "It was a very hard time on all of us. Joe very quickly went downhill and the husband I had was very soon gone in spirit".
Over the next 12 months both Joe and Adam required full-time care. Rebecca noted the "big difference in support" for adults and children. "It's much easier for an adult. My husband needed a hospital bed - he had it in 2-3 days. Adam needs a special cot - like a hospital cot - and it took 20 months to arrive. We had to make do - it's literally makeshift."
Delay of support and equipment is a major issue when dealing with a sick child. "All equipment takes 12-14 months to arrive, and by that time he's grown out of it and has to be reassessed."
"As disabled children grow, their needs change. For example, car adaptation - you can only apply for this once. But as the child grows, his needs change and the car needs to be readjusted, which you have to do yourself."
Joe passed away in December 2011. "One of the saddest things was that Adam no longer knew him." Adam is blind and relies on touch, smell and sound and the changes in his father made it difficult for Adam to recognise Joe. "That broke Joe's heart more than anything".
Rebecca currently has a full-time job. "I couldn't give up my job - I have three children to support. It's hard because you feel like you're wasting your time - everything is a fight."
"Every single day is a fight - for nursing support, respite, everything. You want to be able to spend time with your child - there's been three to four times now where we've almost lost him. You're wasting that time fighting".
Rebecca wrote to the Taoiseach in April. She received a response from the new Minister for Health only last week.
"While the location of where you live has presented challenges to local services in terms of maintaining an adequate support service to your son, I am assured by the HSE that it endeavours at all times to deliver such services to a person’s home regardless of where they live."
"While there are a number of adult facilities within your locality that cater for persons with disabilities, the elderly, those with medical needs and persons requiring palliative care, the HSE has confirmed that there is only one respite facility for children with complex needs like your son Adam. It is acknowledged that Adam is currently on a waiting list for this service and has been waiting for 18 months. I am assured that every effort is being made to address these issues."
"I am advised by the HSE that the waiting time for aids and appliances is currently approximately 12 months. As you will appreciate, the availability of aids and appliances is determined on a priority basis. However, if a piece of equipment is deemed a clinical priority by the prescribing clinician, it is ordered immediately. I understand that Adam is on the aids and appliances waiting list for a wheelchair as of December 2013. The Executive has advised that it has initiated a risk rating to determine Adam’s priority on this waiting list."
"In conclusion, the HSE has acknowledged that your child’s case is a very challenging one, and has given assurances that it is endeavouring to provide a timely, adequate, and appropriate service for Adam."
"You shouldn't have to write to the Taoiseach but you do. Every piece of equipment I got I had to fight, or make a complaint before I could get it."
Rebecca is trying to raise money for Adam through an online fundraiser and fundraising events. She will be completing the 'Dare to Survive' in September and hopes to organise a 'White Collar Boxing' night.