Rare Disease Day - 28th February 2015

Elijah’s Story

Elijah’s Story by Hannah Cree

Elijah’s Story by Hannah CreeElijah was born on 2nd May 2014, after a healthy, normal pregnancy.

We were “ready for this,” we’d planned Elijah, and we’d “had a baby already”- we were “going to really enjoy it this time!”

Elijah was born with a 10/12 cm black mark on his scalp, and a deep cut on his scalp as well. He looked like he had had a difficult time. The midwives said he must have cut his head on my pelvis on the way out and that the mark was bruising. This didn’t sit with me, but I thought ‘they knew better,’ the paediatrics gave him a once over the next day before he went home and were happy there was nothing sinister.

And then the everyday began. Elijah was a terrible baby. He cried every time he was awake, the health visitor spent a lot of time with us and said he was an extremely irritable baby. This started to put strain on Adam and I, and in hindsight poor Ari’Ela took a bit of a back seat.

I only admitted to it a year later, but I had really struggled in these early days with the feeling that Elijah wasn’t “perfect.” His mark was so obvious, and everywhere we went people looked and asked questions “Will he grow hair?”, “Is it sore?” All questions that I had no answer to.

Diagnosis

We went to the paediatrician in August, up until now we knew this was a birthmark and the only problem was that it cut very easily. I still remember the moment that the consultant walked out of the room after telling us that this was a condition called Melanosis, asking about limb movement, explaining that there was a risk of cancer, brain and spinal tumours, learning disability and mental health problems. Adam and I looked at each other in disbelief. It must have been around this time that we met with Dr Alderdice who is our dermatologist, he told us that Melanosis was an old term and told us about CMN, and about Dr Kinsler and Caring Matters Now. We now had somewhere to go for information!

We were referred then for a brain MRI and we would try that as soon as possible without anaesthetic- just using the bottle and swaddle technique.

This didn’t work. The machine was too noisy and Elijah kept waking up so rather than cause him distress, we came back when he was 6 months old and he went under anaesthetic. Then came more anxiety as we waited for the MRI results, which eventually came back as being clear.

Caring Matters Now

Elijah’s Story by Hannah CreeIt was the day after Elijah’s MRI that the BBC One Show featured the CMN, we told all of our friends and family to watch it. There were some difficult stories shown, including that of little Holly – Adam and I felt teary, the future was unpredictable. It was that night that we contacted Caring Matters Now, explaining how isolated we felt in Northern Ireland and asking them what the prospects would be, “Do children with CMN live a happy and healthy life?”

I was then put in contact with our regional support contact Bronagh Cleland who had shared similar experiences with her little boy Ryan. It was so refreshing to meet someone who knew what they were talking about!

Adam and I are Christian and Adam has experienced healing of both epilepsy and of dyslexia. We believed our kids would be well, we never thought it would ‘happen to us,’ you never do.

It was the uncertainty of the condition and the rarity of it that made us so fearful. Up until we were put into contact with Caring Matters Now nobody seemed to know a lot about the condition, it seemed to us that either he would have cancer now, or that he would in the future. We would see posts on social media about children who had died due to complications associated with the condition and I found myself looking at the kids thinking “I need to remember this moment incase something happens to Elijah.” It was unhealthy thinking, but it felt rational at the time.

GOSH

Great Ormond Street was a turning point for us. Adam and I hadn’t spoken to each other much about our worries and we finally sat down to chat over a Pizza Express before our appointment, having just found the hospital. It was a strange feeling- is our child really sick? Why are we at Great Ormond? (We’ve only ever seen this on the TV!) I asked Adam what he was believing for at our appointment- he was hoping we would be told this was the least threatening type of CMN, I thought he was naive and unprepared for the worst. I had resolved myself to know that God was good and sovereign no matter what, but whilst we are usually an optimistic couple we were feeling fearful.

Dr Kinsler was so comfortable with CMN, she didn’t feed into the fear, infact she took one look at Elijah and said “Well, he’s doing well isn’t he?” She went on to say that his was one of the least threatening types.

We’ve had no complications with Elijah so far, other than his head cutting- Adam asked about sports in the future, would Elijah be able to play hockey or rugby? Dr Kinsler reassured us not to limit anything for Elijah unless we found that something led to lots of cuts and then we might want to adjust it! We came home feeling like Elijah was finally ours, we felt in control, and we realised we probably hadn’t bonded with him out of fear of losing him.

Because the condition is so rare, we have been given a lot of different information along the way. Things we had just taken in as truth i.e. a link with learning disabilities like autism. It was the misinformation that fed the fear. When you are faced with a rare condition like this, you take in every single word a health professional says as you’re searching for knowledge and security. Having met Dr Kinsler we feel so much more equipped- we know we have the best knowledge, we are now the experts with other doctors and dermatologists at Elijah’s appointments and we have been fortunate enough to be surrounded by medical professionals who have been honest enough to say they “don’t know” and are willing to learn from us!

I’ve been really honest in this write up, maybe you can relate to us or maybe you’re experience has been totally different. I am a realist, but I also have a faith that our God is so much bigger than what we face. We’re stronger than before and all the fear has been redeemed for good – with opportunities to fundraise and to raise awareness.

I hope that we can give hope to people faced with similar situations, that you will get through this, that as a parent of a child with a rare disease you ARE the expert and to stay in the moment as all that fear does is rob you.

We feel very much that we have regained control and we are out the other side, but we wouldn’t be there without Caring Matters Now! Elijah knows he has “special skin” and we will continue to encourage him to be confident and comfortable in his own skin. As I say this, Elijah is developing more and more satellite Naevi week in and week out and we do worry about other kids and school in the future, but we know we have Caring Matters Now to help us at every step!

Elijah’s Story by Hannah Cree

How Hannah has helped Caring Matters Now!

When Bronagh mentioned the Belfast marathon to me as a fundraiser I thought that I would organise a few relay teams and I most definitely wouldn’t be part of them!

I have never been athletic in anyway and so I watched in awe as Bronagh and my sister partook in the marathon last year!

As I started to mention to people that we were getting teams together the numbers just kept going up and up of people wanting to take part!! Our family and friends offered to join in without needing persuasion, friends were asking their friends and family and 12 of my mother-in-law’s colleagues from SSE all jumped on board!! As the excitement built I decided that I would attempt a leg too! In the end we had 54 people running for Caring Matters Now. We later heard of another 10 who had separately chosen Caring Matters Now as their marathon charity!

Among those running were three other families affected by CMN, Adam and Bronagh Cleland, Robert and Sinead McGlone and Gareth and Jasmine Bleakley. We all set out to get sponsors.

Elijah’s Story by Hannah CreeWe had a reserve list at the ready and it was put to great use right up to the morning of the marathon!! The stress was worth it as each team completed the marathon in great time, a few injuries later, after months of training.

We are so thankful to Product Earth Solutions designing and sponsoring Caring Matters Now t-shirts for every runner! We heard so many people say that they saw the t-shirts all around Belfast on the day!! We hope that this itself raised awareness and the status of the charity in Belfast this year!

It was Elijah’s 2nd birthday on the same day, this felt like a milestone! At the start of our CMN journey we weren’t sure what life would look like for Elijah when he was 2! So we had a party after the marathon for him and our friends and family who had ran with or supported us that day! Aware that people are always being asked to give money to charities left, right and centre, we organised a raffle to give back to those who have shown so much love and support to us! The raffle prizes were incredible thanks again to generous friends, family and work places- it included VIP tickets to Elton John in December kindly donated by SSE and tickets to Ireland v Canada rugby match donated by Bronagh Cleland’s dad! We are so thankful!

So far we have raised over £5000 with donations still coming in! I am delighted that 64 people have touched the people around them with knowledge, awareness and real life stories of those affected by CMN.

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