Matilda B

26 November 2017

MATILDA HAS A LIFE THREATENING ALLERGY TO LATEX. Please don’t send items containing latex to Matilda or her siblings. Matilda is also unable to eat but is happy for her siblings to receive sweets.

Matilda has many life threatening/life limiting conditions which have kept her in and out of hospital all her life.

She has spent months upon months at a time in hospital and despite being away from her siblings and Daddy for long periods, she never complains and always has the biggest smile on her face.

Matilda has intestinal failure; no swallow so cannot eat or drink and therefore needs TPN to keep her alive and well. Because Matilda has ketotic hypoglycaemia she cannot control her blood sugars and they drop dangerously low even after a few minutes of stopping her TPN, so she has to have IV glucose running 24/7 too.

Matilda is completely paralysed from the chest down, so she is a full-time wheelchair user.

Matilda sees herself as any other little girl and although she knows her body doesn’t work as it should or like most other children’s she has a real zest for life and never lets her disabilities stop her from achieving what she wants to do.

Matilda attends our local children’s hospice which she loves to go to as there is so much to do there and she gets spoilt rotten.

Matilda cannot go to school due to medical reasons and her being unpredictable and unstable medically so she is home educated by Mummy.

Sadly in August Matilda’s sister Daisy passed away so its been a very tough year.

Update 9th September 2018

I can believe we have been a member of Post Pals for almost 9 months now! We would like to thank everyone who has sent Matilda and her siblings cards, letters, postcards, gifts and big parcels. You have all made my children very happy and put massive smiles on their faces. So much so that they now wait daily for the postman to come down the drive to eagerly see if he has any mail for anyone!

It’s been a very touch year for us as we have had to experience many firsts without our beloved Daisy….Christmas, New Year, Easter, her 21st birthday and the anniversary on her death in August. Again I would like to thank Post Pals for the love and support we have had and some beautiful messages and cards sent to us. Matilda has been relatively well this year, we have still had a few hospital admissions, mainly for operations to put in new central lines or tubes but nothing prolonged or serious which is really good news. We continue to go to hospital weekly for blood tests and for Vitamin K and A infusions but it’s only a few hours at a time so we can deal with this. We were invited on Post Pals trip to Chessington in April…it was amazing! We have never been before and we were pleasantly surprised how much there was to do there and what a brilliant adventure park it is, there was so much to do. It was nice to meet so many lovely families and meet Vikki and Ally, more friendships formed. The kids …and us had a great time, the kids loved the themed bedrooms and all the animals. Matilda’s highlight was the Giraffe feeding and the ice cream competition.

As summer comes to a close the kids are back at school … little Zachary started reception class and Matilda continues her home education with me. One of our biggest achievements to date happened this week…..Matilda won a Wellchild Inspirational child award. We went to the awards evening and met HRH the Duke and Duchess of Sussex (Prince Harry and Meghan) Matilda was all over the media and online (which she loved) and Prince Harry actually presented her award (how lucky is Matilda) I am so proud of Matilda, she goes through so much but never complains, always has a smile on her face and just takes each day as it comes.

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