Hannah’s London Marathon Challenge!

Hannah and Annabelle have been coming to Sensory Magic almost since we opened, Annabelle is just a superstar, I have been privileged to see her progress, she has such determination and the most wonderful smile, a true treasure to her parents and everyone that knows her.

Annabelle has two loving parents, wanting the best for their child like all parents do, they need support during this journey and have been grateful for all the help, The Daisy Garland, have and continue to give them as a family, the family want to give back, if you can donate any amount they would really appreciate it, please see the link below.

Sensory Magic would also like to support this great cause, by offering a raffle, tickets cost £2.50 each or 5 for £10, when you donate please state how many tickets you would like.

Prizes: 2 x £15 vouchers for Sensory Magic, £25 Sensory Bag, Musical Elephant and a Piano Mat.

Link: https://www.thedaisygarland.org.uk/hannahs-london-marathon-challenge

Our beautiful daughter, Annabelle, had her first seizure when she was just 8 weeks old. After numerous tests, Annabelle was diagnosed with a severe form of epilepsy that would be difficult to control and would likely have a catastrophic effect on her development. It was a really tough time for all of us, made even worse by the restrictions imposed during the pandemic.

Over the next year, Annabelle experienced hundreds (possibly thousands) of seizures of various types and she tried 4 different anti-epileptic drugs to gain some control. The combined effects of the seizures and drugs left her feeling exhausted, floppy and irritable. She stopped smiling and wasn’t interested in anything.

When the fourth drug failed to help Annabelle, we were given the opportunity to try the ketogenic diet as it has proven to reduce seizures by about 50% in 50% of children that have trialed the diet. Within a few months, Annabelle’s seizures did improve and she was much more happy, alert and babbly. Although she has continued to have numerous seizures each day, her quality of life has been so much better and she is making progress in her development. She loves showing off how well she can sit herself up now!

The ketogenic diet has been life changing for many children with drug resistant epilepsy but it isn’t easy to follow and families need to be properly supported. This is something that the Daisy Garland do, by funding ketogenic dieticians, providing equipment, creating recipes and offering an on-line 24 hour parent support group.

One of the most scary things we have cope with are night seizures. Almost every night, Annabelle wakes up suddenly and has a 10 minute seizure. Sometimes she screams but most of the time she jerks very quietly and we worry that one night we will sleep through a bad seizure. We have gone through stages of being so paranoid that one of us would watch over her or sleep on the floor next to her. To help reduce our anxiety and improve our sleep, the Daisy Garland gave us a night time seizure monitor which can alert us if Annabelle has a seizure over night. These monitors are very expensive and they save lives of children like Annabelle.

On April 23rd 2023, Jack and I will both be embarking on a challenge in order to raise money for the Daisy Garland, as a way of saying thank you for everything they have done for us and to make sure they can continue supporting other families.

I be running the London Marathon and I am challenging myself to complete the 26.2 miles in around 4 hours. Meanwhile, Jack will be completing his own “virtual marathon” by walking and pushing Annabelle for the same amount of time it takes me to run the course… no pressure! We will be face-timing each other at various points so that we can complete this challenge as a family in spirit!

If you can support us by donating to this page, we would be extremely grateful for anything you give.
If you can’t donate, thank you for taking the time to read our page.

Love,
Hannah, Jack and Annabelle xxx

Hannah Skinner

Raising funds for: Donate to The Daisy Garland