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Our daughter Lily was born on the 26th January 2008. She was the picture of health and vitality and quickly thrived. However, aged just nine and a half months she became ill. The first sign was that she had no energy, she was quite sick, her sleeping pattern was erratic and had a rash which covered most of her body.

After many visits to the doctor Lily was admitted to North Tyneside hospital on February 16th 2009, where she under went numerous tests and we received the first suggestion that something was seriously wrong. Lily became progressively ill, she had a high fever, her liver and spleen were very enlarged, as were her lymph glands and on February 28th she was admitted to Newcastle General Hospital.

In March 2009 following 2 lumbar punctures, a lymph node biopsy and many complex genetic tests Lily was diagnosed with a very rare genetic disease called HLH. The only treatment for this disease is a bone marrow transplant, but before this could take place, her disease had to be in remission and the pains taking process of finding a suitable donor began. It took many weeks of receiving a large number of drugs (mainly administered through her central line) but eventually the disease went into remission.

On June 18th after a week of chemotherapy, Lily received her transplant. She subsequently required a top up in February this year, and despite the fact that the percentage of donor T cells she has is still quite low, she continues to flourish.

It is fair to say that if it hadn't been for the dedication and expertise of the consultants, doctors, nurses and care assistants working in the Bubble Unit in Newcastle General Hospital, our beautiful girl would not be with us.

The experience of living with a very sick child is terrifying and exhausting, but we are so lucky - and grateful to have this fantastic facility in the northeast. Other families have to travel from as far  afield as Ireland or the midlands because there are only 2 specialist immunolgy units in the UK - Newcastle and Great Ormond St in London.

Lily's immune system is reconstituting, but recovery is a very slow process, with lots of ups and downs along the way - and she will need the specialist expertise provided by the Bubble Unit for the rest of her life. 

On this journeywe have received incredible support from family, friends and colleagues for which we will be forever grateful.

And now my colleagues have very kindly organised the following events to raise funds for this fantastic charity:

On Friday 30th April the Learning and Development Programmes and Support Team are going to do a sponsored walk

On Saturday 12th June my good friends and work mates Alison Jones and Nicolas Andre along with Lily's dad Brian will attempt the 3 Peaks Challenge  - a  26 mile walk

Please support them and dig deep and donate now

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

Please take the time to find out more about the work carried out by the Bubble Unit and the Bubble Foundation by going to the link on the left hand side of this page.