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'We were told to say goodbye to Noah and then had to fight to get a life-saving drug... now we want to give something back'

Lisburn dad Jonny Collins will run the Belfast Half Marathon on Sunday to raise much-needed funds for charity Mencap which provided support for his son Noah who suffers from rare disease SMA Spinal Muscular Atrophy. Karen Ireland reports

Like most parents Jonny Collins (36) from Lisburn thinks he has the happiest, best four-year-old child in the world. But Jonny, who is a full-time carer for his son Noah, had to battle to get his youngster, who suffers from a rare condition, SMA (Spinal Muscular Atrophy), life-saving treatment before his first birthday.

Noah is just one of four children here who have SMA and it was mostly due to his parents’ determination that he eventually got the essential medication he needed to thrive.

Now, his dad wants to give back to the charity Mencap, which has been pivotal in helping to provide both Noah and his family the support and help they need to ensure the little boy has a good quality of life.

Jonny, who is married to Rachael (31), a head of year school teacher, recalls how the couple’s life was turned upside down a week before Noah turned one.

“When Noah was born he was a happy, carefree child who was completely healthy. He started to crawl and met all his milestones and was doing great,” he says.

“Then one night we put him down for a sleep and everything changed forever. We had monitors and alarms in the room for breathing and we checked on him as we normally did. But we thought he was a funny colour and was wheezing. I am a trained lifeguard so I know the vital signs to look out for and I knew something wasn’t right so we called an ambulance.”

At the hospital, the doctors didn’t know what was wrong though it became apparent that Noah had aspirated on his milk as his ability to swallow was very weak. This was a sign his muscles were slowing down.

“They took him into an operating room and ripped his clothes off and started working on him. And, for the first time we were told to prepare to say goodbye to our little son.

“We were devastated and didn’t know what to do but Noah proved the doctors wrong and after a night in intensive care he was sitting up and saying ‘mamma’ and ‘dada’. Those were words we were scared we would never hear again,” Jonny heartbreakingly recalls.

“A few days later we were told that he had the very rare disease SMA (Spinal Muscular Atrophy).

“Again, we were brought into a room and warned that most children with SMA don’t live to see their first birthday. As Noah’s was coming up in a few days we were told to get the family together and enjoy a special day, but again we were being told to say ‘goodbye’ to our son. It was devastating.”

The family were in hospital for a total of six weeks during which time Noah started to lose muscle control in his arms, legs and his head.

“At this stage, nothing mattered but Noah,” adds Jonny. “We were told he would have a life-limiting condition and would need 24-hour care so one of us would need to be with him at all times.

“At the time, I had a coffee shop in South Belfast called Noah’s. I basically shut the doors overnight and made the decision to give up the business as it made more sense for Rachael to keep on her job in teaching and for me to sell the business. I was fortunate in that it sold just six weeks later.”

Jonny admits it was a big adjustment for him going from being a businessman and provider for the family to suddenly being his son’s full-time carer. He had to learn everything about Noah’s medical needs from giving physio three times and day, to feeding tubes and drug administration.

“It was a difficult transition and a lonely one as for the first year or so I was completely housebound and just caring for Noah. He wasn’t allowed in crowded areas where there is an increased risk of infection, and we had to wait on a specialist wheelchair for him.”

Things changed dramatically for the family, though, during one of Noah’s many hospitalisations. Jonny and Rachael heard about a new drug which was being used in the US with remarkable success with children with SMA.

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Better days: Jonny Collins with little Noah

“We overheard a conversation and basically found out by accident that one child out of the four that have the condition here was on the trial drug. The other three weren’t being offered it.

“We were naturally livid as we saw this as giving Noah a fighting chance but we were being denied it. We started campaigning and Rachael talked to the media at the time to get our story out there.

“MLA Nichola Mallon was very supportive and she even raised the issue at Stormont.

“A week before the Assembly elections in March this year my wife received a call from Sinn Fein Northern leader Michelle O’Neill which changed everything. She said that all four of the children in the province would get the drug. It is a £1m drug called Nusinersen, but the American company were prepared to give it to us free of charge which was amazing. The hospital had to agree to administer the medicine by lumbar puncture which they did,”

According to Jonny the change in his son since commencing the drug treatment has been amazing.

“He can now hold his head up and feed himself,” he explains. “Noah has limited movement but can move his arms and legs if you ask him to.

“He is now such a happy wee boy. The change has been remarkable and we are delighted.

“He also started to go to Mencap House three days a week last year which was transformational for all the family. This got Noah out and about and socialising with other children. It was also great for me as I was able to go back to study.

“I need to plan for the future and re-think my career around Noah as even when he goes to school he will always need me to be there when he comes home.

“I am going into my third year of computer programming — so hopefully, when the time is right, I will be able to work from home and contribute to the family again.

“At the moment, I get £60 a week carer’s allowance and out of that I have to pay for my course, and I will have to pay for petrol to take Noah to school every day when he starts primary school in October.

“It is difficult and there is pressure but we make it work for Noah. We have to. I just want to start contributing to the family again and to be able to buy Noah toys and take my family on holiday.”

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Noah’s mum Rachael and Jonny at the hospital

So impressed were the family by Mencap House that Jonny has decided to run this year’s River Rock Half Marathon on Sunday for them.

“They gave us back so much of our life and helped us, so if I can give back just a little and raise vital funds for them then I will.

“I will be running the half marathon with some friends and family and also hope to take part in the Belfast Marathon next May.

“It’s about the simple things such as Noah being able to take his iPad with him everyday to the centre. I would love to raise funds for all the children in the unit so they can have access to an iPad as it would make a huge difference.

“We would also like to organise a gala ball in the new year for Mencap. The charity has helped transform our lives and Noah’s life last year. Mencap helped us get a specially adapted wheelchair and have been there for us every step of the way.

“Noah will start P1 in October and will go to Mitchell House in Belfast. 

“He will be there every morning during the week which will be great for him but it will also allow me to get out and about, to continue my education and to do every day things like the shopping.

“This is another milestone that we are really proud of, especially when we think back to those times when we were told to prepare for the worst and to say ‘goodbye’ to our son and now he is doing really well.”

Belfast City Half Marathon 2017 takes place on Sunday. For more details visit belfastcitymarathon.com. For details about Mencap visit mencapbigstepforward.org. To help raise money for Mencap email fundraising.ni@mencap.org.uk or tel: 028 9069 1351

Spinal muscular atrophy (SMA) is a genetic condition that makes the muscles weaker and causes problems with movement. It’s a serious condition that gets worse over time, but there are treatments to help manage the symptoms.

Symptoms of spinal muscular atrophy

The symptoms of SMA and when they first appear depend on the type of SMA you have. Typical symptoms include:

  •  floppy or weak arms and legs
  •  movement problems — such as difficulty sitting up, crawling or walking
  •  twitching or shaking muscles (tremors)
  •  bone and joint problems — such as an unusually curved spine (scoliosis)
  •  swallowing problems
  •  breathing difficulties

SMA doesn’t affect intelligence or cause learning disabilities.

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