Down's Heart Group

Happy 21st Birthday Callum

Hi, I found myself this morning looking on the net with a need to connect to others who share my experience.

Callum was born on the 5th June 1992 with a complete AVSD. Tomorrow would have been his 21st birthday. Every anniversary is difficult but this one feels harder and no less painful. He was 9 and a half months when he died and was relatively healthy until the last few weeks of his life. He was never given the chance to enjoy a birthday celebration, something I still feel we were both robbed of.

I will never forget the kindness of the nursing staff and medics who fought to save him without success during his thankfully short illness. I will also never forget being asked by the consultant whether I wanted him to fight for his life. A question I only understood later. I recall asking why I Callum could not be put forward for a heart and lung transplant and was told, very sensitively that people like Callum would not be given priority. I know that those kinds of attitudes are no longer acceptable and are challenged by brave families and groups like the Downs Heart group on a daily basis. The Downs Heart Group was a real life line to me both during Cullum’s life and along time after his death.

I have been lucky enough to go on to have two healthy children who are now 20 and 17. I have been able to use my personal experience and have developed a career in adult social care where I continue to fight to ensure all those with a disability are protected from harm and are supported to challenge discrimination.

I now live in a different part of the country where people never knew Callum. I wanted to pay tribute to him on his 21st birthday and to say to all of you with children like Callum that you are blessed although it may not always feel that way.

Happy 21st birthday for tomorrow Callum. You are loved as much today as you ever were.

From Your mum x.

2 Replies

Hello, I am so glad you reached out to us today and we must have spoken before as I've been with DHG since 1990.

I know exactly how you feel, every birthday and anniversary is difficult but somehow the 21st is harder as you know there should have been a celebration. My son Daniel was born on my 29th birthday, so his 21st coincided with my 50th and I knew that people would probably forget that it was bittersweet for me, so having found his 18th hard, especially as I have a niece two days younger than him, I decided to mark our special birthday in some way.

My daughter came up with the idea of dying my hair bright pink (the pink of the DHG logo) and I agreed if I could raise £1000 in sponsorship, I exceeded that and on the day went pink and kept it that colour for just over 14 weeks to mark the time Daniel was with us. I can't say it was an easy day, but all the activity with posting photos on Facebook etc kept me focused on the positives of his short life and I got through it.

I'll be thinking of you tomorrow and if you'd like a chat, please call the DHG 0844 288 4800 and I'm option 5 on the switchboard.


1 like

Hi Penny,

thank you for your response and kind words, we did speak many years ago. As for dying my hair pink ...will have to think about that one.! Keep up the good work and please let me know if I can help others. I often think a good service to have would be a list of parents who could be called upon in those very early days of diagnosis to offer whatever support necessary. It may well be that there is such a service these days.

Thanks again

Best Wishes Angela