Help Daisy get the rehab and support she needs

Hi, I am a friend of Daisy’s,

I have set this up on behalf of Daisy to try and get her some ongoing rehab and equipment. To try and improve the quality of Daisy's life.

Daisy started having strokes in January 2021. Daisy's strokes were found to be caused by a rare progressive brain disease Moyamoya. Daisy continued to become unwell and suffered repeated strokes. These have left Daisy in a wheelchair.

Daisy has been diagnosed with Moyamoya disease, a rare progressive neurovascular disease. Moyamoya diseases cause the arteries in Daisy’s brain to spontaneously close off. It affects 1 in a million.

The compromised blood flow to the brain causes strokes and ongoing stroke symptoms.

Daisy is having multiple mini-strokes a week. Daisy can lose all movement on one side of her body and become paralysed. Daisy’s movement, swallowing, vision and memory have been affected.

Daisy needs long-term rehab. This is not available where Daisy lives.

Daisy's condition is progressive.

Daisy’s brain condition could cause a fatal Bleed or stroke at any point.

Daisy is in need of the following

- neuro-physio therapy - £80 per session (ongoing)

SALT- £200 assessment £80 follow-up (ongoing)

Port-a- Cath- (an indwelling device that allows Daisy to get the treatment she needs without multiple cannulas per month) - est £2000

Equipment such as

Splints, specialist seating, Adjustable bed Est £4000

Out of desperation, I have decided to set up another Go Fund Me on behalf of Daisy; this has not been an easy decision. No one likes to be in this position asking for money. (especially in the current climate) The reality is Daisy can not get what she needs from the NHS.

Daisy now needs 24/7 care. (This isn't easy.) Daisy also has to move to new accommodation to get the level of care she needs.

Here is a blog Daisy wrote on Moyamoya, how she got diagnosed and the issues she faced.

https://www.raredisease.org.uk/rduk-news/daisys-story/

Due to the rarity of Moyamoya, Daisy has struggled to get the help she needs from the NHS. Daisy has tried to get these items, and due to how the NHS is currently stretched, everything takes so long. At the same time, Daisy’s condition gets worse.

Moyamoya is not curable. Surgery can help in some cases, but due to Daisy’s other health issues and the time it has taken to get a diagnosis, it is unclear if surgery will help Daisy. Daisy is trying to decide if go ahead with the surgery. It is currently unclear if Daisy will survive surgery.

Daisy previously did a Go Fund Me after her stroke in Jan 2021. This part-funded a wheelchair and some physiotherapy. The Funds raised helped cover the immediate cost after her stroke and brain bleed. At that point, Daisy believed her condition would improve. Sadly that has not been the case.

There are things available that can help Daisy and improve the quality of her life; anything you can give, no matter how small, would be appreciated.

Let's Do what we can to help Daisy!

Many Thanks,

Maz

xxx