Having spent the first six months of her life in hospital, Alayna was referred to Martin House for end-of-life care at just eight months old. However, Alayna has superseded all expectations, continuing to fight each day much to the amazement of her parents, Sophie and Jezz.

“If she smiles once in a week, we take that as a positive”, says Sophie, Alayna’s mum.

Alayna is younger sister to Harry, six, and George, four, who dote on her. She has suspected mitochondrial disease and as a result she has global development delay, hypertonia and dystonia. She is also registered blind and is non-verbal.

At just two weeks old, Sophie and Jezz noticed Alayna was holding her breath and going pale. The family were admitted into hospital where they spent the next eight months. As the severity of Alayna’s health was realised, her parents were told that Alayna’s condition was life-limiting. It was at this point that Martin House was made known to them.  

“We didn’t know the full extent of Alayna’s problems, so we really panicked when we heard the mention of a hospice. But Dr Michelle (palliative care consultant at Martin House) sat down with us and calmly told us about what we could expect, and having listened to her, we looked forward to the prospect of having this support.

“We first visited as a mid-point between moving from Leeds to Hull hospital. It was our first chance to be a family all together again.

"The first day was overwhelming, but over the course of the four days we stayed, each day just got better and better. Now, we’d be here all the time if we could! Just being able to sit on a comfortable bed and have peace and quiet, and be able to relax all together means the world.”

At eight months old, Alayna contracted sepsis and the family came to Martin House for end-of-life care.

“We were trying to do everything we could to remember her by. We had artwork made using her handprints and footprints. We thought that was all we’d have left of her. We even had her christened here. It was an intense time."

Having spent two weeks at the hospice, Alayna made an incredible recovery and Sophie and Jezz were able to take her home.

“But we truly believe she got better because of the care here and the homely environment she was in, and she’s had virtually no problems since then.”

Alayna has defied the odds so far, but Sophie and Jezz know that when they need support, our hospice will be there for the family.

“She’s doing better than we ever thought she would do, so we take every day as it comes - we still don’t fully know her condition, and with Alayna’s severity, medical professionals suggested she’d live to the age of two, but she’s doing amazingly well.

“We have no expectations from her and we know that no matter what is to come, and when it does come, we’ll feel OK being here.”