Immie

The mother of a two-year-old who has already exceeded her life expectancy, says her amazing daughter is the definition of making the best of a bad situation.

Immie has Infantile Marfan Syndrome – a rare illness which can include significant heart, skeletal, breathing and skin problems. Her parents Nicole and Ash say they have nearly lost their daughter three times.

Sadly the condition has a poor life expectancy. “We have been told a few times that we are on memory making time,” said mum Nicole. “There are no set time limits but we know we don’t have an abundance of time.

“At my 20-week scan, a heart defect was picked up and doctors suspected Marfan Syndrome but every following scan, they seemed a little less worried. When Immie was born we didn’t realise just how poorly she was. We really thought she would become an adult and maybe even have her own children, but no one knew how serious it was.”

Immie, Nicole, Ash, and brother, five-year-old Freddie, are supported by Rainbows.

“When she was 11-months-old, we were told Immie’s heart was in the same condition as an adult with Marfans and that is when we knew how bad she was,” said Nicole.

She had surgery to repair her heart valves at just before her second birthday and again a week later on her bowels. Nicole and Ash were told to expect the worst and didn’t know if their daughter would survive the operations. Yet she defied the odds and learnt to walk and talk again after being told she wouldn’t.

“It is like she hears the doctors, thinks something and then proves them wrong,” said Nicole. “When we were in hospital, we were told about Rainbows. We didn’t know if Immie would make it out of Intensive Care, but we knew Rainbows could help.

“Rainbows helped us make an advance care plan and took a lot of stress off us. We wouldn’t know where to start with a lot of what we have to take in and do.

“We had a family stay and had the best time. Freddie, who has additional needs, loved it like he was on holiday. We made so many precious memories, and at Rainbows, Immie’s quality of life is the centre of everything and that’s what is most important.

“Rainbows are helping us to have priceless time. Being told to make memories with your child is hard, but Rainbows gives us those memories. The little things are so important, like I got to look at the Bereavement Suite and talk about what the future may look like when we get to that part. It had been on my mind, but now I know there is so much support available, and it helped to put my mind at ease.

“If we have any problems, we know we can always contact Rainbows. Somebody will always try to help us fight our corner. Rainbows is there to purely support us and that feels great. It is a rare find and even though they provide medical care, it feels non-clinical.

“When we were there, I looked around and thought all of these families are in such a bad position and every parent is going through hell, but you would never know and I think that is because everyone is so well supported.”

Immie’s condition is now managed by medication and surgery is a last resort as it is too risky. “We have nearly lost her three times and she is still a very poorly girl,” said Nicole. “We have been told that if she goes into cardiac arrest, she is unlikely to survive. But she is just so happy. She is the funniest kid you have ever met in your life and she is the definition of making the best of a bad situation.”

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