The grandparents of a four-year-old Enniskillen boy diagnosed with a rare terminal illness are appealing for public support to help them raise money towards his dietary needs, treatment, hospital trips, and even a possible cure.
Marc Elliott is the son of Damien and Adel and brother to six-week-old Matthew. They live at Carran Close on the Cornagrade Road.
Despite being born a normal healthy baby, Marc who attends Holy Trinity Nursery, cannot fight off infections like the common cold, pneumonia and chest infections.
His happy smiling face shows no sign of illness but his inability to overcome infections led to the diagnosis of Addison’s disease in March.
This is a rare endocrine disorder in which the adrenal gland does not produce enough steroid hormones. The most common symptoms are fatigue, dizziness, muscle weakness, weight loss, difficulty in standing up, vomiting, anxiety, diarrhoea, headache, sweating and joint and muscle pain.
As a result of Marc’s symptoms, he has had nine stays in the Children’s Ward of the Erne Hospital since birth.
After every possible test was carried out, his parents found out in April that he now has Adrenoleukodystrophy (ALD), a rare genetic disorder that only one in 400,000 develop. It causes damage to what is know as the myelin sheath, an insulating membrane that surrounds nerve cells in the brain.
People with ALD accumulate high levels of saturated, very long chain fatty acids in the brain and adrenal cortex because they do not produce the enzyme that breaks down fatty acids in the normal manner.
Marc’s grannies Judina Tummon and Karen Elliott explained: “The results didn’t come back to February but in the meantime Marc took what is known as an Addison’s crisis when he was in hospital.
“This is when he starts to vomit and becomes very dehydrated in a short space of time and his blood sugar is extremely low. The results came back from Belfast and he was put on medication for Addison’s disease. More bloods tests were taken for ALD and this was later confirmed with the worst case scenario that it was terminal. The news came two weeks after baby Matthew was born.”
Marc’s grannies say the families have been in shock ever since.
On Thursday last, Marc and his parents travelled to Bristol to meet a specialist to define his suitability for a bone marrow transplant which if successful, could provide Marc with long-term benefits.
Judina and Karen went on: “This is their first time to go to Bristol and it is to see if Marc is a candidate for a bone marrow transplant. This is all new to us.
“We had never heard of the disease before. Another possible treatment is Lorenzo’s Oil which we are trying to get from Belfast – it can also help reduce or delay the appearance of symptoms.
“They are also doing stem cell research in France and America and are continuing to test for a cure so our hope is that if he was suitable for bone marrow, it would prolong the symptoms until a cure was available.”
An MRI scan has revealed that Marc at present is at the lower ALD scale, just one point over the ‘safe zone’.
“Marc is a normal healthy child to look at,” his grannies reported. “He enjoys playing his DS and Nintendo Wii and mixing with his friends at Holy Trinity Nursery.
“He is a happy go-lucky, pleasant child who is constantly walking up to you to say, ‘Are you alright?’ or ‘I love you’.”
Marc’s illness comes as a big blow to the family who celebrated Damien and Adele’s wedding in Cyprus last June and the birth of Matthew in May.
The Marc Elliott Fund has now been established and through a number of fund-raising events and donations, and the Tummon and Elliott families are hoping to raise money to support Marc in his illness.
“The money is needed for Marc’s hospital trips to Belfast and Bristol. To date all the expenses have been paid by his parents which is difficult with Damien having to take time off work to attend the appointments and Adel currently on maternity leave.
“Marc is also on a strictly low fat diet and is only allowed to consume 30g of fat a day, so his diet is very expensive. We also want to raise money for research so that down the line a cure for ALD may be found.”
The Tummon and Elliott families have taken a pro-active approach to their fund-raising and already have a number of events in place. Among them are a coffee morning in Enniskillen Parish Centre on the 20th June; a toddler event with Kilmacormick Playschool, where Marc attended for a year and a half, and Holy Trinity Nursery, on the 12th June and a bag packing day in ASDA on Father’s Day, Sunday 21st June.
The families are also trying to organise a charity football tournament as Marc’s uncles, PJ and Conor Tummon, Conor Elliott and Damien himself have played for Enniskillen Town, Ballinamallard, Santos and Enniskillen Gaels while the wider family circle have played for Enniskillen Rangers.
Donations can be pledged to the Marc Elliott Fund by contacting Judina on 66325674 or Karen on 66324484 who will put you in touch with the registered bank account.