Mum-of-two Sarah Coates from Carrickfergus will be celebrating her little boy Noah’s 10th birthday this Halloween. Here she shares her family’s heartbreaking story of how seven years ago their life changed forever…
“When I was pregnant with Noah I was so excited about becoming a mum, it was all my husband Greg and I wanted, to have a family. Noah arrived into the world a bouncing baby with no health issues. After birth he continued to develop well, in fact he was an early walker at just 11 months old. At around about 15 months though, we noticed that he seemed to be having discomfort with his leg. He was crying a lot at night, but as a first time mum I didn’t know if I was being paranoid or there was something more to be concerned about.
After a while, call it mother’s intuition, I knew something wasn’t right. Our health visitor arranged for x-rays but they came back clear. By the age of two, we noticed that Noah’s right leg was beginning to trail and other parents observed it too. One day Noah took a little tumble, which should have been fine for a robust toddler, but when I tried to lift him to comfort him, I found that he couldn’t seem to bear any weight on his leg at all. I thought he had possibly broken it and rushed him to the Royal Victoria Hospital in Belfast. By the time we arrived at Children’s A&E he seemed better again, but still we knew something wasn’t quite right.
By September 2009 I was pregnant again with Gracie. Noah had been referred to a paediatric specialist by this time but had picked up a vomiting and diarrhoea bug which he just couldn’t seem to shake off. On October 17, the date sticks in my mind, I went to get him up out of bed and he just couldn’t walk at all. We took him straight to the RVH where he received a CT scan. At this stage the doctors suspected perhaps a mild cerebral palsy, which meant he would have an unsteady gait when walking. In our hearts we were now prepared for something like that and just wanted to know what we were dealing with.
After a stay of a couple of days we were just preparing to take Noah home when we were asked by one of the doctors to step into a room so that she could speak to us privately. Our hearts sank in our chests when we saw the number of doctors and nurses there and I think we both had a terrible foreboding that this could not be good news. People talk about how your life can change in a spilt second and that was how it was for us. One minute we were preparing to go home, the next the doctor was explaining that Noah had had an abnormal brain scan. I recall saying, ‘What does that mean, will he have trouble walking?’ I could see the doctor was upset when she replied, ‘No, Noah has a condition called Leukodystrophy which I’m afraid to tell you is a life-limiting condition.’ The world just stopped spinning as we tried to take in her words. All I could keep saying was, ‘I don’t understand, what you mean?’
The rest of the day was horrendous. Going home to tell our parents but still without any real knowledge of what this disease meant for Noah. There is world-renowned professor in Holland [Prof van der Knaap, VU University Medical Center, Amsterdam] so Noah’s scan was sent to her for analysis. A week before Gracie was born in December we received the shattering news that Noah had Vanishing White Matter Disease, also known as Childhood Ataxia with Central Nervous System Hypomyelination a chronic and progressive condition which destroys myelin, the brain’s white matter. Once the myelin is damaged or disappears, the brain signals (messages) don’t get transmitted correctly from the brain to the rest of the body and brain functions become hampered or lost completely.
It’s very rare, there is currently no cure and it results in life expectancy being reduced to teenage years. In fact it is so rare, there are only approx. 250 reported cases worldwide. Prof van der Knapp is one of only two research projects in the world who are currently working to find a cure [the other is in Israel]. Children who have this will (between the ages of two and six) start to display symptoms including uncoordinated muscle movement; abnormal muscle stiffness (spasticity); difficulty walking or standing unaided; possible deterioration of mental functioning and loss of motor functions. Eventually it causes the inability to walk, talk and eat or sit unassisted. They lose the use of their hands and head control. Patients can have epileptic seizures, irritability and blindness or deafness and any infection or a minor head trauma during childhood can have a massive impact, possibly resulting in a coma.
Noah does seem to have an aggressive form of the disease. He was diagnosed just before his third birthday and will be ten this October 31. Over the last year he has deteriorated much more rapidly, which could be a result of the disease reaching his brain stem. Last Christmas he came off his feet completely and is no longer able to go to school and receives daily palliative care. He is no longer able to sit up unaided and if he is up out of bed for an hour each day, that’s a good day for us. He is an incredible little boy, our little superhero, coping with everything the way he does.
The help and support we have received as a family has also been amazing, from the nursing teams to the Children’s Hospice. They’ve worked together to provide a really good care package for us and we are so grateful. This genetic condition affects one in four pregnancies for people who are carriers, so at the age of one year Gracie was tested as well. Devastatingly, she also has the condition. Aged six, she attends and loves her local primary school although we do need to put preventative steps in place to protect her health, such as antibiotics during the winter months, receiving the flu vaccination and being kept out of school if there is an infection going around. She also receives a chickpox vaccination every year – a normal childhood illness could be extremely harmful for her. At the moment Gracie isn’t symptomatic of her condition. She is still too young to fully understand and we are waiting for those difficult questions to come one day. It breaks our heart when she helps look after Noah and ‘pretends’ to be the same to be a comfort to him.
Our faith in God has kept us strong, and has also been a great source of comfort to Noah. As he is getting older, he understands more and of course will have his bad days – he has lost so much. At the Hospice they talk to you about anticipated grief, mourning for your child while they are still with you, and for all the things that have been taken away from you. We are thankful for the miracle of the support we have received from our family, our friends, our church, Gracie’s school and the local community. Some wonderful people are organising a fundraising event for us in November to help us with equipment that we need to help make Noah more comfortable. Despite everything we believe that we are blessed because we have two wonderful children whom we love beyond words. When you have a child with a condition like this you meet lots of wonderful families and you soon realise that the strength and kindness people show you can be incredible – it’s what helps get you through each day.
A Gala Fundraising Ball will take place on Saturday November 12 in the Europa Hotel Belfast. Tickets are £45 each and are available through Sandra Pyper Property Management, located on the High Street in Carrickfergus. Tel 07973 111 968