Katherine Coates told the “Courier”: “My two adult children have an extremely rare genetic disease called Kufs Disease, they are the only two known cases in the UK. We have a blog page on “Facebook” called Kufs Disease.
“My son Thomas is 32-years-old and my daughter, Sarah is 29-years-old.
“Sarah is married but due to her disability she is now living on a hospital bed in the dining room, so she has absolutely no privacy.
“She had an assessment more than two years ago and was told she needed a downstairs bedroom.
“We have now finally got planning permission but the costs are more than the disability facilities grant.
“I have cashed in my pension and started crowdfunding, but we are still £38,000 short of the money needed to build her extension.”
Katherine explained that the disease manifests by epilepsy, dementia, dysphasia and total lack of mobility.
She continued: “Both my children are mainly bedbound and are PEG fed (*Percutaneous endoscopic gastrostomy (PEG) is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient’s stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate (for example, because of dysphagia or sedation).
“They have been pioneers with CBD oil and we are now very slowly withdrawing their anti-seizure medication.
(*Cannabidiol is a phytocannabinoid discovered in 1940. It is one of some 113 identified cannabinoids in cannabis plants and accounts for up to 40 per cent of the plant’s extract. In 2018, clinical research on cannabidiol included preliminary studies of anxiety, cognition, movement disorders, and pain).
“As you are probably aware, it is extremely difficult to get cannaboloids prescribed, but our consultant Professor Zeman at Royal Devon and Exeter Hospital has made a request to NHS England as he believes our children are exceptional cases and will benefit from it.
“The local healthcare professionals call us ‘Shobrooke Community Hospital’ as our team of carers, most of whom are from Crediton, are all experts in the disease and we have performed many procedures usually only conducted in hospital.
“We have influenced the NG feeding policy and medical professionals have spent a day with us to enhance their clinical practice.”
Katherine said that Sarah has been living in a hospital bed in the dining room since last September.
“While this is great she is with the family, she has no private space and gets confused, often asking if she can go home? It would be wonderful to create her her own bedroom.
“We just don’t have the full funds to go ahead with the build. We have raised £60,000 towards it but the cost of the basic build is £100,000.
“If successful in raising funds, the build could start this year.”
Katherine said that a carer’s room will also be created and her and Tom’s rooms would be close together so that they can be right next to them.
Tom moved into his specially adapted bedroom in 2013 after the family converted the garage.
Katherine added that she will make a plaque with everyone’s name on it so that Sarah will always remember those who have generously donated.
If you can help with some funding towards an extension to create a downstairs bedroom for Sarah, please visit: https://www.justgiving.com/crowdfunding/sarah-louise-walker?utm_medium=email&utm_source=ExactTarget&utm_campaign=20190515_114718 .
Alternatively, please make contact via the “Courier” by emailing: [email protected] or telephone Alan at the "Courier" on 01363 774263.