Hi Everyone,

I am hoping to raise some awareness but also to fundraise for a charity that means a lot to me and my family. The charity is the Williams Syndrome Foundation. I am doing all of this in loving memory of my beautiful little boy, Cole, who I couldn’t more proud off.

So, let me tell you all about my special little man Cole.

Cole’s story

Cole Carter Donlan was born on 3/4/23 at 5:30AM weighing 5lb 8. He was born in Russell’s Hall Hospital, so that does make him a Black Country boy. When Cole finally arrived, I still couldn’t believe that I was Dad. I just looked at my parter, Naomi, I was in such awe because of well she done but also the that we are now a family. As soon as Cole was in my arms, this wave of unconditional love and protection came flooding in. We couldn’t wait to get home and just get settled in with but this was delayed by a night due Cole having the jitters so they wanted to keep him in for a night.

The first two weeks of home life was amazing. Prepare a bottle, feed Cole, cuddle, sleep, repeat.

However, after 4 weeks, Cole started to projectile vomit which resulted in multiple trips to doctors but also, very scarily a considerable amount of weight loss for Cole. We tried different concoctions to help Cole try and keep his feed down but nothing was working. At 8 weeks we had our checkup with our local GP doctor where she referred us to a dietitian but also to start using a food thicken which helped so much for keeping Cole’s feed down. At the same, the doctor also did a complete checkup to which resulted in her spotting a heart murmur which again in turn we was referred to a heart specialist.

Our appointment to see the specialist was a few months later, September to be exact. When we went, our Doctor was brilliant and was amazing with Cole. Cole had to have an echo scan on his heart to find out if he did have a heart murmur. The scan finished and instead of a heart murmur, the doctor found that Cole had narrow blood vessels (Arteries). Me and partner were taken back but the doctor did advise that this could resolve itself with age. He wanted us to come back a month later to see another specialist but this time, the doctor will be from there Birmingham Children’s Hospital. Also, during our visit, the doctor noticed Cole had a hernia which he wanted us get checked out. This did result in a trip to the Birmingham Children’s Hospital. We didn’t get home to early hours in the morning but everything was okay at this point.

One month later, the day had come to see the specialist. Back to the hospital we go again. Cole had to have another echo, However, this time it was a lot longer than before, which was concerning to both me and my partner. Cole was not liking it one bit, constantly crying and wouldn’t settle. The doctor finally stopped, we dressed Cole, but I think me and partner both knew something was up.

The doctor informed us that Cole’s heart isn’t functioning properly. Basically Cole’s heart was not pumping correctly, only one side of his heart was pumping correctly. Cole then had to go for ECG test so the doctor could compare the echo scans against the ECG. We went back into consultation room to where we were told that we wouldn’t be going home and we need to stay in hospital until Cole could be transferred over to Birmingham Children’s Hospital to receive treatment. At this point, the doctors did not know what caused Cole’s heart to be this way. From the point of Cole having his first scan and this one, his heart function was affected.

Whilst being at Birmingham Children’s Hospital, Cole received multiple echo scans to try and figure why his heart function was so poor. They wanted to start Cole on a drug called Milrinone. It improves cardiac contractility (inotropy) and cardiac relaxation (lusitropy) and induces vasodilation. This did however result in Cole having to have multiple cannulas, a long-line cannula and also a central line.

Me and my partner Naomi had to have multiple meetings with doctors to discuss Cole’s heart and what could be cause. Multiple theories of what it could be were mentioned such as genetics or viruses. We talked about possible treatments and the plan for Cole’s stay as they still didn’t know the cause. As they thought genetics could be the cause, bloods were taken from Cole but also from myself and Naomi. We received the news during Cole’s stay that he had Williams Syndrome. Williams Syndrome is a rare congenital disorder that occurs randomly and affects around one in 18,000 people in the UK. It is non-hereditary and causes distinctive facial characteristics and a wide range of learning difficulties. Infants often have delayed development and can develop physical and mental health problems, including anxiety and depression in later life. WS people tend to be talkative and excessively friendly towards adults.

We also received news that Cole had a condition called dilated cardiomyopathy. This was completely unrelated to his Williams Syndrome. Dilated cardiomyopathy, or DCM, is a disease of the heart muscle which makes the muscle walls become stretched and thin (dilated). The thinner walls are weakened, this means the heart can’t squeeze (contract) properly to pump blood to the rest of the body. We later found out that Cole developed this condition due to a virus which in turn caused Myocarditis. Myocarditis is inflammation of the heart muscle (myocardium). The inflammation can reduce the heart's ability to pump blood. With this condition, every procedure Cole had was a risk due to the poor function of Cole’s heart. He did everything with a smile on his face and was so brave. We had to have multiple meetings with doctors and anaesthetists to run through the risks of what could happen if things did go wrong.

Cole had his good days and bad days. Some of the bad days did mean that he had to be put on Airvo. This helped with Cole’s breathing so it can take some pressure off his heart.

Cole’s hernias didn’t help, they kept on coming out and getting in stuck which was every painful for Cole and sometimes the doctors even had to try and push them back in to relive the pain. It was decided that Cole would receive an operation to repair his hernias.

The operation went perfectly however, during the process of Cole being brought back around, he suffered a Cardiac arrest. He was then transferred to PICU so they could keep a closer eye on him.

Unfortunately on the 26/11/23 (just two days after his hernia operation) during Cole’s stay in the PICU, Cole suffered four more cardiac arrests (three very close together) which lead to our beautiful little boy passing away.

As I said, I want to raise awareness and fundraise for the Williams Syndrome Foundation as the community welcomed my family with open arms. as The foundation are brilliant. They sent out all the info you could ever ask for but also provided us with support we needed. We also reached out to other family’s who also In turn were so supportive.

Please all follow @wsf_uk and please give the website a look https://williams-syndrome.org

Now I want to do different fundraising tasks that push me out my comfort zone and do it all in memory of beautiful little brave boy. I am going to start of by doing the Three Peaks (Snowdon, Scafell Pike & Ben Nevis). I won’t be doing them in 24hrs but I will be doing them in three consecutive months. I will be doing a different challenge each year. A marathon 2025, swimming the length of the English Channel 2026.

If you could all donate that would be excellent but if not, if you could share this and raise awareness, I would really appreciate it.

Thank you

Jak