Elsie’s Golf Day
It’s Elsie’s golf day on August 30th at Poultwood
The auction to take place in the evening at the George & Dragon….
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We are so looking forward to Elsie’s Trust golf day 2024.
The format of a hearty breakfast followed by a fun 18 holes at Poult Wood golf course, and the hospitality of the George and Dragon BBQ is the perfect opportunity to help Elsie in this it’s 5th year.
With a new improved raffle and an online live auction this should be even more improved than usual with the help from Jon Maidman.
All we need is the sun to shine as it has in all the previous years!
Kate, Elsie and I would like to thank you all for your super continued support.
Elsies
Story
Our baby girl was born in February 2016, and we were thrilled that’s she was finally here. Life was brilliant and she was growing and doing all the normal things a baby should do until Elsie got to 18 months, we noticed that she was slow to sit up unaided and lost some skills she had learnt such as feeding herself and talking.
Later that year Elsie had nasty seizure and went blue. This ended up with a 999 call and a few days in hospital. After many tests and scans it was thought to be Epilepsy. We went and saw a specialist in London who just wanted to run some gene test to rule things out and that’s the first time we heard of Rett syndrome. We were told not to look it up, so guess what? I did!
In December 2018 we got the results, and it came back positive for Rett
Syndrome. Our whole world crumbled.
We digested the news and threw ourselves into making awareness and fundraising. It’s mega hard work looking after Elsie and making sure she is happy but it’s all worth it when she looks at you with love. As she is unable to talk, she often gets very frustrated and we have no idea why. We have spent many a time at hospital with infections, cluster seizures, seeing various consultants and routine blood tests. Through all of this she keeps smiling and gets on with it like a true warrior.
This is where you all help: funds raised via the Golf Day and Auction are vital for Elsie’s Trust.
Just one example: The trust enabled us to purchase a Baffin chair which goes from sitting to standing and from sitting to lying down. This allows her body to keep moving and not settle in position, this was so important as in May Elsie underwent a double hip surgery.
When Elsie does something little it's a massive milestone for us. We are so proud to be her Mum and Dad and we will continue to fight to get a cure.
We will never give up!
TOgetHERstronger
What is Rett Syndrome:
Rett syndrome is a rare genetic disorder that affects brain development, resulting in severe mental and physical disability. Almost all cases of Rett syndrome are caused by a mutation (a change in the DNA) in the MECP2 gene, which is found on the X chromosome (one of the sex chromosomes). This gene contains instructions to make a particular protein (MeCP2) that is vital for brain development. The gene abnormality prevents nerve cells in the brain from working properly.