"At my 20 week scan, doctors told me that one of my twins had a problem with her heart. She had hypoplastic left heart syndrome and was to have a number of open heart surgeries within the first five years of her life.
When my babies, Ezri and Maya, were born, Maya was taken straight from me, I didn’t get to hold or see her. She had her first open heart surgery when she was only 10 days old.
A time that should have been filled with excitement and new baby joy was replaced with regular hospital appointments and knowing that the only thing keeping my child alive was a fragile piece of gauze in her heart.
Having to balance healthy twins is a challenge on its own but with Maya so sick I felt lost and I only survived on adrenaline.
During those first few years of her life, Maya was extremely clinically vulnerable. We could not do anything that would involve her picking up germs; no playgroups or weekly shopping. It was isolating for us all. I lost touch with friends and felt as if I was a burden to my family.
In October 2019, Family Support Worker Wendy started supporting us. The support is invaluable. No judgement, no pressure.
When Covid began we had to shield and isolate. Wendy was an anchor to me and was around throughout the pandemic dropping off craft boxes, weekly shopping, and medications from the pharmacy.
She video-called Maya and Ezri twice a week to read them stories and sing nursery rhymes. It gave me somebody to talk to and somebody else for the girls to interact with.
Maya had to have an essential operation and I could not find childcare for Ezri. If Wendy had not been able to look after Ezri for a few hours, Maya’s operation would have had to be cancelled.
When the restrictions from lockdown were lifted, Wendy helped me to take the girls for walks and get new shoes.
In 2022, Maya went into hospital for her fourth open heart surgery. We were there for 59 days.
Wendy gave me the opportunity to take some time out for myself, helped with the school run for Ezri and gave Maya a chance to have some fun. Wendy supported Ezri with her emotional needs, helping her to understand why her sister was not at home.
Being a single mum I am constantly on the go, every day. When Wendy is here I can sit down, knowing that the girls are safe, happy and having some much-needed fun.
Wendy is there for me, listening to my concerns about Maya’s future, and helping me find solutions.
Wendy has supported with additional hospital visits, transport for regular blood tests and taking Ezri out to entertain her whilst we attend appointments. Wendy takes Ezri out to places she otherwise would not be able to go. As my attention is always on Maya, it is heartwarming to see Ezri having the attention she deserves.
Maya must carry an emergency injection and I cannot leave Maya with anyone untrained in administering the injection. Wendy completed the training and Maya is so excited at the prospect of being able to experience the same things as Ezri. Previously, Maya could see in Ezri all the things she could not do.
Without Wendy’s support, I would feel isolated and Maya and Ezri would not have had the opportunities, attention and experiences they deserved.
What makes Wendy and Rainbow Trust shine for me is that the support is not just tangible. Without the calls and somebody to talk to during the isolation and hard days, it would have been extremely detrimental to my mental health, and that would have impacted hugely on Ezri and Maya too. Wendy makes us smile, which is something very precious.
Rainbow Trust have truly been the lifeline that we as a family have all needed."
There are so many families like Maya's, that may be feeling so helplessly alone and desperate, who need this specialist support. Please donate today to help us support more families like Maya's.
Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.
We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.
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