Leah is one of our young people who has been using Haven House for many years and finds we are the perfect place for her. She has Down’s Syndrome and a rare lung condition called Idiopathic Pulmonary Haemosiderosis (IPH) which causes bleeding in the capillaries and an accumulation of iron in the lungs.

Due to her condition, life is not always easy for 17-year-old Leah. She lives with her mum, Yvonne, in Walthamstow and has two older siblings. In 2009 Leah became extremely unwell and was admitted to hospital where she was diagnosed with IPH.

Yvonne says:

It was our worst nightmare. Leah was on a ventilator for almost two weeks and had to be transferred to Addenbrooke's Hospital in Cambridge as there were no available intensive care beds in London with the equipment that she needed.

Afterwards Leah was facing a long recovery. Her treatment had left her muscles weak and she would require a lot of physiotherapy in order to walk again. Yvonne would also need to make adaptions to her home and move Leah’s bedroom downstairs to make it easier to accommodate her oxygen.

In 2010, the Royal London Hospital suggested that Leah was referred to Haven House.

Yvonne says:

My heart sank when they said the word hospice. I was really fearful about going there, but I decided to see what it was all about. Very quickly I saw it was a happy place for children to be, with so much fun things for them to do.

Over the last eight years Leah and Yvonne have been regular visitors to Haven House. Yvonne attends our Coffee Mornings and Expert Parenting programme which provides advice and support to parents.

Yvonne says:

It has been wonderful to see Leah’s health improve in recent years and to see her become more independent at Haven House.

Leah stays at the hospice for overnight respite care which gives Yvonne some time to herself. Leah enjoys being able to access music therapy, take part in play activities and relax in our spa bathroom.   

Yvonne says:

I am completely at ease leaving Leah at the hospice and it is great to get a good night’s sleep. It’s nice to have a break from the routine of medicines and exercises whilst knowing Leah is being well looked after.

Leah says:

At Haven House I like to help the nurses and meet the other children. I like to get my nails painted purple, and I have made friends with Aiza, Massimo and Ashley.

Leah is so helpful with our Care team that she is known as ‘Modern Matron’, and our Healthcare Support Worker, Stacey Bishop, helps to create a special nurses’ badge for Leah when she’s at Haven House.  

This year Leah started attending our Young Adults Group run in partnership with The J’s Hospice and Saint Francis Hospice. The group provides opportunities for young people to meet, build friendships and have fun.

Yvonne concludes:

Leah recently took part in a disco night with the group. She loves to dance and had a really fun time. A few years ago, it would have been harder for Leah to take part in such activities, but hopefully as her health continues to improve, we can look to the future with optimism.

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