Fund raising for Isabel's Connect & Learn Laptop
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Hello there, thank you for taking the time to even click on this link.
My name is Jackie and I am raising money for my Niece Isabel to have a Supernova Connect & Learn laptop which is used for students with low vision. The following is the link for this, if you could take a moment to have a look and also read on for our wonderful Isabel's story
When Isabel was born she was immediately diagnosed with glaucoma and referred to Great Ormond St where she had surgery at 2 weeks old and was monitored regularly.
At 7 months old Isabel was diagnosed with Neurofibromatosis type 1 also known as NF1, following the appearance of tumours inside her mouth and cheek. NF1 causes tumours to grow on nerves and is incurable.
This was also found to be the cause of Glaucoma.
More information on NF1 can be found here
Isabel has spent the 10 years of her life being closely monitored for both the Glaucoma and NF1 and it quickly became apparent that she had irreparably lost the sight in her right eye. Due to the tumours being in her eyelids she is visually restricted in the left, as well as light sensitive.
She has had a further two complex surgeries around her eyes to help reduce the weight of the tumours restricting the vision.
NF tumours regrow after surgery, so it can only be done when absolutely necessary, there is a risk of damage to the nerves each time.
The tumours have continued to grow and have been pushing the bone structure of her face making it asymmetrical. In future she will need major reconstructive surgery which will be performed by top NF surgeons at GOSH, they are hoping to let her grow as much as possible beforehand to minimise the amount of times she will need this surgery.
Between January 2020 and June 2022 Isabel undertook a 2.5 year pioneering chemotherapy trial at Great Ormond Steet Childrens Hospital, with the hope of slowing down tumour growth whilst she had natural growth spurts. This meant she endured regular blood tests, MRIs, echos, ECGs and so on.
Despite missing school for all of these appointments and checks Isabel didn’t complain once, and strove to keep up with her peers. She is amongst the top of her class!
In the next few months Isabels surgeons will be operating again to debulk her eyelids and remove part of her cheek
She is due to start Secondary school in September, a huge change, and one she is so excited for! Unfortunately due to cuts in funding and staff shortage her usual basic technical support (standard laptop) going into Secondary School has been removed from her Educational Healthcare Plan, a move my Sister and family are currently trying to fight
They have been working closely with Guide Dogs for the Blind who have recommended a perfect laptop for Isabel to cope in mainstream school. Usually they would allow you to apply for a grant for this technology but funding has been frozen.
This type of laptop would be incredible, and give her the same opportunities to learn as her peers! She could also use it on trains and in hospital on the days she has to be off school for appointments.
The laptop would see her through from the start of school to her GCSEs and beyond. Guide dogs for the blind would support and advise updates required.
Isabel is the most loving, fun, confident and clever young lady. Given the right support she will be able to have an amazing life and be a positive contributor to our country.
Please check out the link attached to see what a huge benefit this laptop could be to a bright child like Isabel
Thank you so much for reading. Anything that could be spared towards this would be such a huge help
Jackie x
Organizer and beneficiary
Jackie Whittle
Organizer
England
Sally Palmer
Beneficiary