We hope to raise as much money as possible for Martin House in memory of our beautiful daughter Lily Grace Parkin.

After two extremely difficult weeks in the BRI and RMCH and going through test after test, Lily was given the diagnosis of a rare genetic disease called Infantile onset Pompe Disease with no current cure and she was suffering with a severe form.

Pompe disease affects around 1 in 40,000 people and is currently diagnosed in less than 200 people in the uk. It is a type of genetic disease in which a complex sugar called glycogen builds up in your body’s cells. The disease results from the deficiency of a digestive enzyme called acid alpha-glucosidase (GAA). GAA normally breaks down complex sugars in your body. It causes a range of symptoms from hypotonia and cardiomegaly.

The hardest decision we will ever have to make had to be made almost overnight and although there is a form of treatment, Lily would not have benefited and instead would have suffered constant hospital care, routine infusions/tests and eventual intubation. There would have been no quality of life.

We wanted Lily to be surrounded by love and family and all of her comforts in the days she had left. Being as special as she was, she surpassed all expectations and instead of days she gave us three beautiful weeks.

All we wanted was for our family to be together again and that’s where Martin House came in. Being given the chance to stay together, have support and allow Lily to receive end of life care in a homely environment ended up being more than we could have hoped for.

We will never be able to thank them enough for the memories they allowed us to make with Lily. It is such a happy, loving and comforting place free of outside stress and worry. We were able to be in the moment and soak up every second and truly appreciate those last moments. 24/7 care and support, Memory making, our wedding in the sanctuary, and the use of a cuddle cot in the days after are just a few of the special things MH gave my family.

A thank you will never be enough for us so the best we can do is raise as much as we can in Lily’s name so that Martin House can continue being a lifeline for families that need them!

Our little Lily

7:40am

7lb 4oz

17/10/2023 - 15/04/2024