Archives for the month of: July, 2012

I have some lovely new trainers & have set up a Just Giving page. The page is part of a team so if you are doing your own event, like Jennie’s sponsored weight loss or you are part of Sian’s toddle you can become part of the team. Just get in touch with you e-mail address and I will ‘invite’ you to join the team!

https://www.justgiving.com/account/your-pages/Tillysmarathon

I will add more information to it over the next few days!

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On the 22nd of July we joined other members of Surrey SAND’s for their annual balloon release. It was held in the SAND’s memorial garden in Epsom cemetary, a beautiful garden for reflection that was opened last month. Darcy released a balloon for Tilly & said we should write ‘I love you Tilly’ on the card. Beautiful & emotional.

Surrey SAND’s annual balloon release

I’ve had lots of support with fundraising ideas from family and friends. This is what we have come up with so far:

  • Tilly’s toddle 8th September  The lovely Sian is organising this. The kids (or big kids) will get sponsored to run, walk or toddle a mile and aiming to do 26 miles between them. The event will be in Ilminster, so if you’d like to join in or sponsor someone, get in touch!
  • Recipe Book My Mum is collecting recipes to put together in a book, which we will sell. More details to follow.
  • Pirates & Princess’ DJ Ginge is ‘donating’ his 30th birthday party as a fundraiser. We will be organising a ‘treasure hunt’ type raffle and other fun and games. Who knows….DJ Ginge may even make an appearance himself.
  • Sponsored Slim Cousin Jennie & her friend are currently underway with a sponsored slim. If you fancy joining in or sponsoring them give me a shout. They are doing brilliantly well so far, so it might cost you a few quid.
  • The Studio on Staplegrove road in Taunton will be running a fundraising event. Once Donna & I have met we will have more details but you can bet it will be fantastic!

There are some other things in the pipe line, so keep checking and if you want to get involved, just get in touch with me!

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!)

Tilly Grace Beaumont