Leia’s Story

Meet Katie, her husband Tom and their 3 children, Leia, Robin, and Dylan…

 

Katie, Tom, and their children have been supported by Noah’s Ark since their first child, Leia was a baby.

Leia was born in 2019 after what seemed like normal pregnancy.

Katie and Tom then discovered that Leia had barely any amniotic fluid and she was delivered prematurely. Leia seemed perfectly healthy apart from some feeding issues but shortly afterwards, the couple received the devastating news that Leia had severe white matter damage to her brain and serious renal issues and may not have more than a few months to live. The family were referred through Great Ormond Street Palliative Care Team to us at Noah’s Ark Children’s Hospice.

 

Katie says of her visit to The Ark:

“Here we were in a place with smiling faces, cups of tea, bright and accessible rooms for children to be children, I was so grateful this place existed to support us.”

The family now access most of the services at The Ark, receiving music therapy and overnight respite care which is very important for the family as it’s the only place they can leave Leia, safe in the knowledge that our expert team are on hand as she is PEG fed, has serious epilepsy and is profoundly disabled. We have had the pleasure of looking after Leia when baby Dylan came along allowing Katie the time she needed to recover in hospital.

After being warned initially by doctors that Leia may never smile, Leia is exceeding expectations. Leia is now turning age five, has started school and has a gorgeous smile! A smile that is very apparent when she spends time at The Ark. In Katie’s words:

“Leia’s smile means everything.”

The family are very involved with our Family Activities. Katie has attended the Mum’s brunch and dinner events; Tom is in the Dad’s group and the whole family attend the Family Days with Robin and Dylan receiving specialised sibling support.

Katie adds:

“We don’t really get to go on big holidays as a family because it’s very difficult with Leia in terms of accessibility and care. So, these family events are what we look forward to. These are our little mini holidays really.”

The family also receive support from their Family Link Worker Maria, Home Support Volunteer Nicola and Specialist Carer, Alice, with whom Leia has developed a very special bond.

Katie says:

“When Alice either comes to our house or the hospital or we bring Leia here to The Ark, we know Leia is very safe, that she is very loved and that she will do everything to make Leia happy.”

Katie realises that her initial ideas of what Noah’s Ark Children’s Hospice would be like were very different to the reality. She adds:

“A children’s hospice is a place for children to live. It’s a place where memories are made and where you feel supported. It’s about making the most of the life that you have, even if it’s not as long a life as the average person.”

 

 

We captured the family’s story on film, which you can watch here:

 

With sincere thanks to Katie, Tom, Leia, Robin, and Dylan for sharing their story. It’s a real privilege to help them make the most of every day.