Noah The Real Superhero
By: Find A Cure For Vwm
Tags: Health, Love, Genetics

We first noticed that something wasn’t quite right when Noah started walking, he would complain of pain in his legs and wake up at night crying, we talked to our health visitor about our concerns and Noah was referred at 18 months to have an x-ray carried out. The x-ray was carried out but came back clear, the doctor thought that he may grow out of it and may just have an unsteady gait. Noah continued to develop normally in every way, except at times he seemed to have difficulties walking and keeping his balance, it wasn’t until March 2009 when Noah was 2 1/2 that he started to have what we would soon call ‘episodes’, these would happen when Noah had received a bump to the head, he didn’t have to hit his head hard to experience an episode.

As parents you may imagine we were very worried over the period between March 09 and October 09 Noah experienced quite a few episodes, when he did hit his head he would become dazed and lose the ability to walk for a period of time this could last from 15 minutes to 24 hours. We continually took him to hospital were doctors were lost as to what caused these episodes, he was referred to a consultant at Antrim hospital who was very kind and at last we felt someone was really listening to our concerns about Noah, he referred Noah to have an MRI scan at the Royal Hospital for sick children unfortunately the waiting list was 9 months long.

Noah continued to have these episodes, at the end of August 2009 he caught a viral infection this left him completely drained and very tired. This was the start of a rapid deterioration within Noah’s mobility, over the next month his walking became very unsteady, we were so worried about him on the Thursday 17th October 2009 as Noah tried to get out of bed he could not walk at all.

I remember the panic clearly, I took him straight to hospital and explained that I was not leaving until someone had properly checked him out, Noah was admitted to hospital for further tests, the next few days were absolutely horrendous having to watch him suffer so much and to see the distress he was in, but Noah’s style was that he always bounced back with a smile.

Noah had a CT scan which the consultants thought would not show anything too serious, we were told that we could go home they explained that perhaps Noah had slight walking difficulties due to a lack of oxygen he received while in the womb, we were concerned but thanked God that it was nothing more sinister. The consultant told us that we had to wait until we received the results of the scan, so we were thankful that we could pack and go home.

When the nurse asked us to go to the family room we thought nothing of it, but as soon as we walked into the room we were met by Noah’s consultant plus two other doctors. I could feel the panic, when she sat us down and said Noah had a very abnormal scan the fear set in, she went on to explain that Noah had Leukodsytrophy ( “What was she talking about?”) I remember her saying that it was a progressive disease, at that I remember just breaking down in tears and putting my head on Greg’s knee, I asked her would the worst thing be that Noah would lose his ability to walk? She looked at me and just said I am so sorry, but the worst will be that Noah will have a limited life expectancy. I can’t even explain the physical pain and feelings of sickness that I felt at that point, to date it has been that worse moment of my life, I can’t describe it. I didn’t understand was this our lovely little boy she was talking about? Somehow Greg asked about the baby I was 7 months pregnant with, we were told that it was genetic so we would need to find out which type Noah had.

That same day the consultant allowed us to go home for a few hours to tell our families, I remember asking Greg’s family to meet us at his mums, telling them was horrible and they were devastated, Noah was just delighted to get home and see his little cousin Harry.

I had to tell my own family over the phone as they were away at the time they were equally devastated. We went back to hospital for a further week of testing and an MRI scan, they explained it would have to be sent to a DR M VAN DER KNAPP in Holland to find out which type of Leukodystrophy it was.

Noah was diagnosed with VANISHING WHITE MATTER DISEASE (VWM), a week after Gracie was born and we were devastated all over again, when we were given information from the internet which was appalling to read, we read that there currently is no cure, and treatment is only given when symptoms appear, Noah may have long periods of stability and good health so each day we try to focus on one day at a time.

We also found out after 7 months of waiting that Greg and I are also carriers of this gene and that it causes the disease, this means unfortunately there was a 1 in 4 chance that Gracie may have also had it, we had to get her tested and unfortunately she was also diagnosed with VANISHING WHITE MATTER DISEASE (VWM) on the 19th October 2010.

This is our story so far, we are on a roller coaster but believe that God is in control, we have put our trust and our children’s lives into his hands without God in our lives it would be a lot harder to cope, he has helped sustain us. We continue to pray for our miracle, Noah and Gracie are an inspiration to us and at times can put you to shame with their ability to love life and live it the full they are a joy to be around.

Noah continues at times to have episodes if he gets a bump on the head, although he makes a pretty good recovery and apart from being ataxic he continues to develop normally the same as any other 4 year old.

Noah 2019

Written by Noah’s mom.

Update: Noah -diagnosed with VWM Oct 2009,earned angel wings Jul 17, 2019

To learn more about VWM see: https://vwmff.org/ www.savingchloesaxby.com