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Siblings’ stories
Twins Alex and William were born in 2018. Soon after, Alex was diagnosed with Hypoplastic Left Heart Syndrome, a congenital heart defect that affects the blood flow around the heart. His family were told he would need multiple surgeries – the first of which happened only days after he was born. It was touch and go whether he’d survive. Fortunately after surgery and 51 days in hospital, the family was finally able to bring him, and William home.
Now 3, Alex is a happy, smiley little boy. “You look at him and he’s always smiling” says mum Kelly, “You wouldn’t even think there was anything wrong if you couldn’t see his tube or the scars that lace his chest”. Alex still needs round-the-clock care and has mobility, dermatological and sensory issues and will be soon facing another major heart surgery. Alex and his family come to Forget Me Not because whilst his surgeries will help to prolong his life, his condition remains life-shortening.
Josh, who’s 16, says being Alex’s brother has its ups and downs, “due to the trips to hospital and the worry of what could happen but the ups of watching how far he’s come and how he still smiles despite everything he’s been through.”
“We’ve been able to meet new people at the hospice who are in the same position and the hospice helps take care of Alex so us as a family can have a break and my mum gets to have an extra pair of hands to help. My mum has had to look after us all (6 of us) on her own so she is always doing something and never gets a break unless it’s at the hospice. We have to help a lot and it’s a lot of responsibility. It’s challenging being at school when Alex is sick as I can’t concentrate. The hospice visits Alex and my mum and support her. The hospice can be a distraction to how difficult life can be. My mum doesn’t have to worry about day-to-day things like washing, cooking and cleaning and she has a special bond with many of them, especially those who have been there from the start.”
Alex’s sister Ruby is 12 years old. She says: “Being a big sister is great because I can be an example to the younger ones and show them responsibility.”
“I love being a big sister to Alex because I love playing with him and making him laugh. It’s a hard time and everyone needs each other. When Alex has to go to hospital it is hard and it makes me sad and scared but I know it will help him. Forget Me Not makes me feel safe and relaxed. I love doing the crafts with them, especially drawing and baking. I like that we can meet up with other siblings dealing with the same things as us.”
11 year old Scarlet, says: “I love being a big sister to Alex because he is always happy but it can be a struggle because he needs lots of medication and care. When Alex is in hospital it is hard going to school knowing he’s there. I love going places with him but we need lots of stuff and lots of planning to go. Forget Me Not help me remember not to worry when he is in hospital because he’s always safe and whatever happens it will be OK.”
And then of course there’s William, Alex’s twin brother. Mum Kelly says “William is Alex’s biggest supporter. Just recently Alex has started learning to crawl upstairs as part of his physio and William will sit at the top shouting ‘you can do it, you can do it’! He calms and soothes Alex when I need to do tube care or if Alex is sad, he always comes to make sure he’s OK. He’d be lost without him.”
Lucie, 11, is sister to Taniesha. Taniesha was diagnosed with a congenital heart condition before birth, has Downs Syndrome and has undergone a number of serious heart and bowel operations. She tires easily and can’t do as much as other children. Lucie says: “It is amazing to be Taniesha’s older sister, mostly because she’s funny and cute, it’s nice to have someone to spend time with and to watch grow up with me. It makes me fed up because she can’t do things I do because she gets tired after a little time and that she can’t have her ears pierced. The hospice helped me try not to worry when she has to go for surgeries and explained and helped me understand that she may not live as long as other children.”
At Forget Me Not, we provide creative therapy – such as play, music, crafts – as well as counselling and lots of fun activities, to help siblings find ways to deal with difficult emotions, express their feelings and, as Josh says, take their mind off how hard things can be. And of course, it’s only because of our supporters that we can do any of that – thank you for making a difference to siblings like Josh, Ruby, Scarlet and Lucie.
