A FAMILY from Shobrooke near Crediton which launched an appeal for public help to raise £38,000 to help pay for an extension for a downstairs bedroom and bathroom for a seriously ill family member says the appeal has now reached £14,000, thanks to generous individuals, businesses and organisations.

Katherine Coates told the “Courier” in May: “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.”

OVERWHELMING RESPONSE

This week Katherine said: “The response to our appeal has been absolutely overwhelming.

“More than 170 people have donated via our JustGiving page and there have been some heartwarming messages from those who have donated.

“Because of the incredible support, we felt that we could go ahead and book the builder, so we hope the work will begin in September and be finished before Christmas.

“Our total now stands at £14,279, which is 35 per cent towards our target.

“The support has been coming from not only locally but as far away as New Zealand and Leicester, where my husband’s old Scout group organised a fundraiser and gave us a donation of £800.

“One Crediton business gave us a very kind donation of £5,000 and we cannot thank the business owners enough. The money will make such a difference.

“We have been able to re-band our Council Tax, which has helped raise £675 and Crediton charity, The Kelly Trust kindly gave us £2,000, which also helps us so much.”

THRILLED

Katherine added that she was also thrilled to receive many smaller donations.

Many donations, many anonymous, have been dropped off at the “Crediton Courier” office and others sent directly to the family.

A few of the messages from the donations website read: “We hope this goes some way to relieving the problems of your difficult situation” - Peter Forbes, Glenfield Christadelphians; “We hope this gift will help you to reach your target and give Sarah her privacy and comfort, sent with love” - Lynda and Tony; “A refund I got in the post, wasn’t expected so it’s yours Sarah X” - anonymous; “I can’t imagine how hard this must be. As a parent I can recognise the pure love and devotion you have for your children and the resolve determination to do right by them. I wish you all the best” - Que.

BEDBOUND

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 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.”

Katherine said that the total cost of the build is £100,000 but the family was able to raise the £60,000.

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.

FUNDRAISERS

A Charity Ballroom and Latin Tea Dance will be held at Newton St Cyres Parish Hall from 3pm to 5.30pm on Sunday, September 22 in aid of the appeal.

There will be instruction from professional tutors and all ages and abilities will be welcome.

Tickets are £10 per person or £25 per family, including tea and cakes.

A charity fundraiser will also be held at the Red Lion, Shobrooke, during the August Bank Holiday Weekend.

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] .

Donations can be dropped off at the “Courier” office at 102 High Street, Crediton.