Our beautiful rainbow baby was born back in December 2021 through emergency C Section. Unbeknown to us, he was very poorly and had to be resuscitated at birth, before being rushed to Broomfield Neonatal Unit for specialist care.

Axel was about 8 hours old when we finally got to meet him, and we were totally shocked with the list of health concerns that his consultant reeled off. He couldn’t breathe or feed on his own. He was floppy. He wasn’t even strong enough to cry.

Little did we know that he would never be able to live life the way that his siblings had before him. We thought that he’d get better and life would resume as normal but that wasn’t really the case.

Axel had genetics blood tests organised by Great Ormond Street at a few days old, and when we were faced with the results 11 days later, life changed forever.

Axel was diagnosed with Congenital Myotonic Dystrophy and we were told that day, that in his current condition, he likely wouldn’t make it past 3 weeks old…

Myotonic dystrophy is a rare genetic condition that causes progressive muscle weakness and wasting. It can affect muscles of movement and often affects the electrical conduction system of the heart, breathing and swallowing muscles, bowels, lens of the eye and brain.

We were told that if Axel survived, he may never smile, may never breathe on his own, and may never be able to eat orally. However, there was no way we were giving up without a fight.

With help from an amazing speech and language therapist, I was able to breast feed Axel from 8 weeks old. I insisted the doctors take out his Nasal Gastric Tube, as this boy was determined to smash through any barriers put in front of him.

He was also able to be weaned off of oxygen so that when he came home, he could breathe independently.

He started to smile weakly and I thought from that point on, there would be no stopping him. He’d learn to sit, crawl and walk just like everyone else and be able to live a full and happy life.

Realistically, it was never going to be that easy. Not only did he have a form of muscular dystrophy, but also bilateral talipes. He had to have casts on both feet, all the way up to his nappy from 4 weeks old, and finally graduated to boots at bars at about 10 weeks old. Which he still wears for 12-14 hours every night.

Axel was getting stronger through his monthly nhs physio.. he got a panda chair, and standing frame to help support his physical needs and we were making small steps to progress towards sitting and standing on his own two feet until last September, when we had a huge set back.

Axel fell poorly when we were travelling back from a family break from Butlins and we ended up back in Broomfield hospital as he was in horrendous pain with his stomach and was vomiting green bile. After 5 days of fighting, he eventually had an xray that revealed that his bowel had twisted and he needed emergency surgery. He was rushed to Great Ormond Street for emergency bowel surgery and ended up admitted there for 9 weeks as his recovery wasn’t as simple as first thought. It took a long time to get him back to eating orally and build up his strength again, and it felt like we were back to square one. It took a long time to build him back up to how he was before he fell ill.

We were released from Great Ormond Street at the end on November, only to encounter a new issue. Axel now also suffers from what is believed to be Ketotic Hypoglycaemia, which has had him admitted to hospital a good few times since December.

Axel is currently 2.5 years old and is unable to sit or stand independently. His head control has slowly improved over time, but he tires very quickly. As myotonic dystrophy is a progressive condition, time is not on our side. He is likely to be able to build on his strength for a certain amount of time, but once he reaches his peak, he will start to become weaker again. We have been told that he is unlikely to live far into adulthood so it is so important that he is able to live his best life for as long as possible.

With this in mind, we are fundraising to try and give him the best opportunities in life. We hope to start with private physio, which can be up to £100 per hour. I would also love to be able to provide him with a new specialist wheelchair too as the one he is currently in, has absolutely no suspension and can cause him some discomfort, but to be honest, we would be grateful for anything we can raise to help him live a better life with some independence.

I was in 2 minds whether or not to create this fundraiser, as I already do lots for baby loss charities and I didn’t want anyone to think I was being selfish in asking for support for our boy…..

…but Axel is the BRAVEST, STRONGEST, MOST DETERMINED boy I know, and I would be doing him a disservice if I didn’t provide him with all of the opportunities he deserves, in what could be a short life

We could not be more grateful for all of the support we receive from the nhs, but sadly Axel needs much more help that they cannot provide.

Thank you for reading and for your continued support to help give our boy a better life.