Practical support

Meeting Lily Wells for the first time is an unforgettable experience.

In spite of her tiny stature and apparent frailty, she is warm, chatty and immediately engaging with visitors. If you disregarded the wispiness of her golden locks you would probably think she was a perfectly healthy two year old who appears mature beyond her years.

And yet the last two years have been nothing short of a rollercoaster for Lily and her family, from diagnosis at the age of ten months to a bone marrow transplant last November. Lily, the youngest of Kirsty and Steve Wells' three children, is battling with juvenile myelomonocytic leukaemia, so life for the Wells' family revolves around hospital stays, chemotherapy, frequent infections and the need for constant medical monitoring of Lily's condition. Time at home with her parents and siblings, brother Joey (4) and sister Amber (12), is precious and every effort is made to maximise the chance to be a "normal" family. Kirsty has learnt to deal with the complexities of Lily's daily medications routine and her gastrostomy, a gastric feeding tube that helps when patients are malnourished and cannot take enough food by mouth to maintain their weight. Amber and Joey have become used to frequently staying with extended family and friends when Lily is in hospital and Steve is constantly trying to juggle the demands of working to provide for his family with being with his children. Life is tough; Lily has been critically ill on several occasions but the Wells family is united in their fight to find a cure for Lily's leukaemia.

Last year Lily's doctors told Steve and Kirsty that a bone marrow transplant was Lily's best chance for a cure. Miraculously, a donor was found in the United States and the transplant was performed in November at Great Ormond Street Hospital. Kirsty and Steve were conscious that the demands of being in isolation with Lily for at least a month would be traumatic for Amber and Joey too, so they opted to share the responsibility of staying in hospital so that both parents could also spend some time at home with the older children. Having already used up his leave allocation (when Lily was previously in hospital) Steve had to take unpaid leave in order to care for his children during the transplant, causing financial stress at a time that was already emotionally and physically challenging in the extreme.

Christmas came early to the Wells' family when Lily was well enough to leave hospital on the 23rd December. Both Kirsty and Steve say that waking up on Christmas morning at home together with Lily, Amber and Joey was the best present ever. Weekly trips to London continue for tests and consultations but if all goes to plan Lily will be well enough to enjoy a week with her family at The Bluebells in May for a much deserved holiday.

Here's to 2011 being Lily's year!