Two-year-old Isla has an illness so rare that she may be the only child in the world with the condition. Her parents Stacey and Kyle share her story.
Our journey began within minutes of Isla being born when medics feared our baby had Sepsis. We didn’t even get to hold her and we knew something was very wrong. It felt like we were sat watching something on TV, not something that was actually happening to us.
It took hours before she was stabilised and we could see her, we were distraught. There were just leads coming from everywhere. All this equipment on our tiny baby. On her first night, we nearly lost her and they had to put her in a coma as her body was trying to shut down.
Isla was diagnosed with Mandibuloacral Dysplasia, a condition that causes a variety of abnormalities involving bone development and skin colouring. She also has a heart condition and very narrow airways, which resulted in her having a tracheostomy. Isla is able to speak some words but her main form of communication is Makaton sign language.
Her genetic consultant told us that she is the only child in the world recorded with this specific condition. Isla is being studied by many consultants and is paving the way for children in the future.
After her birth, Isla fought hard and a month later, she was allowed home but terrifyingly, when she was distressed, her tongue would fall back and cover her airway and Isla would turn blue. Following a scary episode where she was resuscitated at hospital, Isla was fi tted with a tracheostomy at 10-weeks-old.
We had gone from having a baby that cried all the time because she couldn’t breathe and then we couldn’t hear her cry at all. It was heart-breaking.
We found life difficult, especially trying to absorb all of the medical knowledge we needed to keep our daughter alive while also trying to devote time to our now seven-year-old daughter, Paige. She has been incredible. When Isla was in the incubator and covered in wires and tubes, we told Paige that her sister was in a special spaceship. But when she saw her, she didn’t see any of that. She just saw her sister and that was it. She coped better than us.
In 2018, we were referred to Rainbows. Our lifeline. Our fi rst stay was just magical. Paige was so excited to be able to go swimming with Isla. We used the hydrotherapy pool twice and it was the highlight of the weekend for all of us. Being able to watch those two play together with no limits or worries was amazing.
Christmas at Rainbows will always have a special place in our hearts because of our fi rst visit, which was the family Christmas Party. Meeting with other families in similar situations made us feel really comfortable. No one asked questions and both our girls were made to feel really special.
Paige misses out on a lot as our time is taken up with Isla. But at Rainbows, it is just as much about her. And going forward, Paige will get involved with the sibling activities at Rainbows and she cannot wait.
Isla is very expressive and has such a big personality. If we put a challenge in front of her, she can do it. Her and Paige have the most fantastic relationship. We wouldn’t change things for the world.
It is a privilege to come to Rainbows and meet everyone. Rainbows has changed our lives. The girls love it so much and the hardest thing about Rainbows is leaving.
We don’t know about her future. No one can tell us anything as they haven’t come across this condition before. Everything is a maybe. It can feel really lonely but we just have to make the most of every moment and Rainbows really helps us to do that.
Please make a £20 donation today. Rainbows’ children, young people and their families need your help now, because when a life is short there is no time to wait. For some, tomorrow will simply be too late.
Thank you so much
Stacey and Kyle