This is a charity that in reality you hope you don’t ever need to use. But for the families that do have to use it, it is an invaluable service as it is essentially supporting them through the lowest of times. 

Sadly Leah died aged 14months old in March 2022. Cruelly taken far too young leaving behind a loving family and a devastated 4yo older sister. Coping with your own emotions is hard enough but explaining things and seeing a 4 year olds upset that we can’t smooth away is even harder. Heartbreaking.

As a parent, being told that your child has a terminal progressive disease is crushing and numbing. Nothing prepares you for it and from that day on, you are on heightened alert and on an untrodden path of emotions that you can’t explain. 

We came into contact with this charity 3 months ago when our beautiful baby girl was admitted to ICU. The paediatric palliative care team and hospice team become your anchor helping you to navigate and structure your week emotionally and practically where and when needed. They are with you for the difficult decisions and conversations. 

Living day by day is incredibly hard and none more so than when Leah has a 4year old big sister who still requires ‘normal life and routine’. The hospice’s support network welcomed us in as a family unit so Leah’s older sister could associate the hospice with additional precious family time and happy memories before Leah’s passing. 

Chestnut Tree’s services extend to play and psychologist support to help guide siblings and parents through an understanding of what changes are happening to Leah with her disease. The hospice facilities are impressive and in lovely grounds and offer families a welcome break from the 4 walls of your home which you see so much more when caring for a child with a life limiting disease. 

These last few months have been a whirlwind. Our world was turned upside down on the 21st December when Leah was taken into hospital after a shock respiratory arrest where she needed CPR. She was cared for by the amazing Evelina Childrens ICU team in London who are such a special team of people professionally and in how they care for the children they treat. 

24th December. Christmas Eve. Leah was diagnosed with the rare genetic Gauchers type II disease. Devastating. It impacts between 1-5 babies a year globally and we have been unfairly one of them. We were told that Leah had a life expectancy of between aged 1 and 2 years old.  At this point, Leah had not yet even celebrated her 1st birthday when we were given this diagnosis. 

24th Jan-31st Jan. The rollercoaster of emotions that is ICU. As parents it’s bizarre how dependable and normalised you become to the bubble of ICU once you have been in it. The prospect of suddenly walking out the door going home on your own with your baby albeit under the new bombshell of the disease is really over-whelming despite being what you hope for every minute of the day. That is why we came home via the hospice. 

The hospice team really come into their own with their post hospital step-down stays and support offered. Allowing you to readjust to the ‘new family normal’ is key away from the hospital environment. It gives you a chance to get confident in your baby’s new routine/medicines/equipment and allows you to get to know the new community team that is put in place around you. The hospice ethos is all about helping you to live Leah’s remaining life to the full to create amazing extra memories for her and the family. 

We did that for Leah. 

She wanted to get home to be back with us all and she did it. She surprised us and the doctors at every turn doing everything on her own terms. 

Strong throughout and still super smiley despite everything she went through. She created memories and sparks of joy for all the nurses and community teams that came across her…..let alone her wider family. 

31st Jan-March 2022;

Leah was so happy being back at home. Those extra 6 weeks she gave us were such a precious gift. Her smile and twinkly eyes lit up the room and we will never forget her love for her playing, interactions, clapping and continual waving to everyone she saw. We were able to give her so many extra special memories and experiences in those six weeks because as a family we were determined to keep getting out and about for Leah and her older sister despite being completely unaware on timescales. Those 6 weeks enabled so many extra cuddles and a chance for her older sister to love her even more (if that was even possible).

Sadly Leah passed away peacefully in our arms at her grandparents house when we happened to be visiting there. We are so pleased she got to see all the wider family, have the cuddles she deserved and for it still to remain on her terms. The hospice team network travelled out to the grandparents house to be with us in our darkest hours….Thank you. No more hospital intervention was needed as Leah had been through enough of that over Christmas and much preferred being at home. 

The hospice team will now help us as they do for all families in planning the funeral for Leah. It will be a horrendous day. Something a parent never expects to do and if left to us, we wouldn’t even know where to start. 

With this charities support, we know we will eventually return to lead a ‘normal’ life again. We keep telling ourselves that we will have to do this for our eldest daughter who deserves just that. 

We know there are no words in this situation but wish to thank everyone who has reached out. It really does help and we appreciate it. We have found that people tend to steer clear in these situations but we want to celebrate Leah’s memories and need to process what we have been through with people around us. We also have chosen to support this charity in Leah’s memory and in lieu of flowers. 

Leah the superstar and our beautiful little girl will never be forgotten. We have lost a part of us and we will never be the same without her amazing, unique character around us. Little Miss Giggles was how she came to be fondly recognised across recent months. She will be with us in everything we do going forward. One day hopefully we will start to embody the strength and resilience that she has shown us.

 Leah, we love you so so much our little darling. 

 Love Claire, Dean and big sister XX