An Angel in the book of life wrote down my baby’s birth. And whispered as she closed the book “too beautiful for earth”

As you may know, on the 22nd of March this year we had a baby girl called Tilly Grace, in Kingston hospital, who came home with us as anyone would expect. After being readmitted to Kingston twice with weight loss, problems escalated and at twelve days old Tilly was transferred to St. Georges PICU after some breathing problems and a suspected seizure. Over the next week Tilly had many tests and was seen by several specialist as her problems worsened. Neurologists began to suspect the problem was serious and Tilly’s outlook was very poor. We were told that Tilly’s results pointed to a condition known as Early Infantile Epileptic Encephalopathy and if she survived she would have very delayed development and be completely dependant.  As time passed and her problems progressed, her condition meant that she was unable to breath for herself.  We were advised that the best thing for Tilly was to withdraw her ventilation and on the 24th of April we lost Tilly.

I am rasing money for St Georges Hospital in Tooting as, despite the devastating outcome, the staff at St. Georges PICU cared for Tilly incredibly, showing compassion and professionalism throughout. Even in her last hours the nurses still showed such care for her, ensuring that she was comfortable and, despite Tilly being such a tiny baby, allowing her dignity. Tilly was in PICU for three weeks and throughout that time we were kept informed of any developments or changes in her condition. The nursing and medical staff were also brilliant with our 3 year old Darcy who came to visit her sister on most days. Towards the end we were dealt with compassionately and never felt that we were on our own. The nurses made sure that we got to have cuddles with Tilly and helped with her care. One outstanding memory for me is giving her a bath on the day she passed away.

As we come to terms with loosing Tilly and adjust to life being very different than we expected I feel very strongly that I would like to give something back to the hospital. I think that until you are faced with a situation like ours, you take for granted services that are offered and to be able to run the marathon and raise money in Tilly’s memory would be my way of saying thank you.

I have applied to run the marathon for St. Georges and pledged to raise £2000. Although I will not know if I have a place until October I still intend to raise the money. This blog will keep you up to date with my training & other fundraising events that people are planning in Tilly’s memory (and don’t worry all the posts won’t be this long!)

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