This blog grew out of a private Facebook page of the same name, that my 15 year old daughter Leah and I set up in the Summer of 2013.
We live near Limavady in N. Ireland.
Leah became unwell towards the end of 2012 and had her first abnormal blood test on her fifteenth birthday, the 31st December 2012.
On Sunday the 24th March 2013, the night before her first bone marrow biopsy, one of Leah’s Church Youth Leaders recorded a short video of her talking about her relationship with God, which you can watch here.
In April 2013 Leah was diagnosed with paediatric myelodysplasia with monosomy 7. This is a very rare haematological malignancy.
We were subsequently told that this had been caused by an even rarer GATA2 genetic mutation. Click here to learn more about GATA2 deficiencies.
Leah’s brother’s bone marrow was a 10/10 match and Leah had a bone marrow transplant on the 1st August 2013 in Bristol Children’s Hospital in England. This transplant was successful in curing her myelodysplasia and monosomy 7,
Leah however, had several post-transplant complications.
Nevertheless she appeared to be recovering and the doctors were hopeful.
Sadly, on Friday 27th December 2013, I took Leah to a routine outpatient appointment at Belfast City Hospital, from which she never returned.
Within 24hrs Leah was in ICU, struggling to breathe due to pneumonitis, a rare complication of transplant.
On Thursday 16th January 2014, in the Northern Ireland Children’s Hospice, Leah died in peace and dignity, surrounded by love.