Raylen's story started from a very young age. When he was just one, he started getting abscesses. This continued until he was five, when he developed an abscess under his armpit and then a swelling on his face.

A two day visit to hospital lasted seven weeks while he underwent lots of tests. A blood test revealed he had a very rare condition, called chronic granulomatous disease (CGD) - meaning his immune system does not work properly. A condition so rare that in the UK, CGD affects about eight people in a million. Without treatment, the condition can be life-limiting and life-threatening for Raylen. An infection could be fatal for him.

Raylen was put on a bone marrow transplant list - and luckily a match was found quickly and he began his chemotherapy treatment. Even going through such a difficult time and being on an isolation ward at Great Ormond Street Hospital, Raylen remained a happy and playful little boy and smiled throughout. 

Raylen had a strict and strenuous medication routine managed by his parents. At the time the family were having home visits from their community nurse and it was through her that they found out about Haven House. After an initial visit to the hospice Raylen started to make use of our holistic services. 

Like any 7-year old Raylen is so sociable, so we decided to start with music, yoga and play sessions. These were all so welcomed and it was such a joy to see him interacting at home with things that were normal for him. These therapies helped him so much. The team were an absolute lifeline to him and lifted his spirits immensely. It was quality time for him and it gave me some respite - I had time to just grab a coffee and get some word done around the house. During all of this Haven House have been there for us. 

Lily, the hospice's play specialist, has been an absolute diamond to us during this lockdown. She drives past the house and delivers parcels full of activities, puzzles and toys to keep Raylen occupied. It is the highlight of his day.

I can't stress enough how Haven House has helped us as a family. Raylen has not only had to deal with his medications and treatment but also the consequences of lockdown. He has been shielding and unfortunately has not been able to go to school. We have not seen our family and friends in what feels like forever. I have real concerns about what this time is doing to Raylen's mental health - there has been a lot of change and upheaval in his little life. This had led to higher levels of anxiety requiring further intervention from his Yoga Therapist Grace.

Raylen has recently had a relapse from the bone marrow transplant and became severely ill again. All it took was a telephone call to Haven House and the team were there for us once again.

We have tried to keep things as normal as they can be for Raylen - whatever 'normal' is these days. 

Raylen's Mum

The pandemic has meant that Raylen's lifestyle and routine has dramatically changes. Raylen is extremely vulnerable to infection so he has been unable to see family or friends and he has note been able to go to school. I have not been ale to visit Raylen in his home so our sessions are now on zoom. We play games such as spot the difference and do some art activities such as making fluffy polar bears with cotton wool! Raylen really enjoys the messy play, especially making slime, snow and sand building. 

He's coped so well with all the changes and remains a hapy, energetic and imaginative young oy. I have noticed a difference in Raylen's personality. I am so proud of how independent Raylen has become and the growth he has show.

Lily, Haven House play specialist