Hello! We are Adam, Nick, Louise and Scott and we're running the Bupa 10,000 10k in London on Sunday 25th May 2014 for The Sick Children's Trust. 

Nick's very brave one year old daughter Lilly Belle contracted a rare immune system disorder in August 2013 called Hemophagocytic Lymphohistiocytosis (HLH). Lilly spent six weeks at Addenbrookes Hospital and in intensive care and currently visits the hospital every fortnight for a four hour session of chemotherapy. 

So Nick, his brother Adam, sister Louise and her boyfriend Scott set themselves a challenge to run 10k to raise £800 for the amazing charity that helped keep a family together.

Here's how it happened:

August 2013:
At 14 months old Lilly got tonsillitis. She then got a full body rash and suffered with an astronomically high temperature. The nurses at Colchester General Hospital couldn't diagnose her condition, firstly thinking it was meningitis, then a tropical disease. Lilly was very poorly and following numerous panicked visits and overnight stays at the hospital for blood tests and transfusions we got the shock of our lives when we were told it could be Leukemia. Lilly was taken by ambulance to Addenbrookes Hospital to the children's cancer ward. 

She had countless blood tests, several blood and platelet transfusions, lumbar punctures, bone marrow biopsies and was on a drip for several days. The hospital is 1hr 30mins drive from Nick and Clare's home so they had to move to Acorn House (accommodation on the hospital site run by The Sick Children's Trust) to make sure they could be by Lilly's side for as many hours in the day as possible.

She was now in intensive care.

During the same month Nick was very ill after suffering from viral meningitis and Clare was a month pregnant with their second baby.

September 2013:
Lilly was having good days and bad days. One night after they had been staying in the hospital for around a week, Nick and Clare were about to get some sleep when Nick received a phone call from a duty nurse in intensive care to say Lilly had stopped breathing, her heart had stopped beating, her lungs were covered in fluid and the nurses were currently resuscitating her. They ran as fast as they could to get to Lilly and when they got to her they saw the nurses gathered around her trying to bring her back to life. Thankfully Lilly's heart started beating again but she was having trouble breathing on her own. She was put in an induced coma and was on a life support machine.

That morning close family rushed to her bedside and for seven days whilst she was in a coma they would take it in turns to sit with Lilly, talk to her, read her favourite books and play her favourite Ska music. Lilly was given 10 days to breathe by herself because her tiny lungs wouldn't have been able to cope with the ventilator for any longer. We were all praying that she would be strong enough to breathe on her own.

After a few days when the medicine was gradually being reduced, Lilly's hands started to twitch and she was clutching her favourite pom pom blanket twiddling it with her tiny fingers. She was still in a coma but was getting her senses back. Another day went by and Lilly opened her eyes for the first time. Nick and Clare were with her. 

October 2013
Another gruelling few days in intensive care and Lilly was finally ready to be transferred to the ward again. She was very weak from the treatment and couldn't walk. 

The next few weeks saw her making so much progress and she was taking baby steps again. She was eating lots of her favourite foods (Dairylea cheese triangles and Cadbury's chocolate buttons). 

Lilly's immune system was now non-existent and she couldn't be around anyone apart from mummy and daddy because if she caught something as small as a cold it could have been life threatening to her. She did catch a few colds which meant she had to go in isolation in hospital for 48 hours each time and on medication.

January 2014:
Lilly is coming on leaps and bounds, she still has chemotherapy every fortnight and she can be seen toddling around the ward attached to her chemo playing with the toys. She's not letting this disease beat her! We are now waiting to hear whether she needs a bone marrow transplant at Great Ormond Street Hospital. If she does, we are hoping that when Lilly's new baby brother or sister is born in March that he/she will be a match. 

It costs The Sick Children's Trust £30 per night to keep a family together and close to their sick child who is in hospital, until they are well enough to return home. Some babies and children have been in there since Christmas 2012. This support is invaluable in times of crisis. 

We would appreciate any donation to help keep the charity going and for it to continue to provide a home for families with extremely sick children.

If you don't currently donate blood or platelets and aren't on the bone marrow register we also urge you to think about doing it as you could save someone's life. 

10k might not sound like that big of a challenge but Scott and Louise can't even run a mile between then and Adam and Nick haven't run in years! So please support us however big or small you can because the money goes directly towards helping people in a similar situation to Nick and Clare. 

Thank you for taking the time to read Lilly's story. 

Adam, Nick, Louise and Scott xxxx

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