On the 27th July I will be cycling from London to my hometown of Glasgow. Whilst cycling 450 miles, I plan to raise as much money & awareness as I can for Ebony Cowie. Ebony is a friend of my daughter, and has sadly been suffering with EDS for over 15 years. Toni recently asked me to sponsor Ebony, once I read her story I thought about how awful it must be for Ebony & her family and cannot begin to imagine what her and her family have been through. At just 29 Ebony has had to go through far more pain then most of us will experience in a life time.

As some of you may know I had an accident a few years ago and I was very close to being permanently in a wheel chair, however things went my way and I am ok. After my accident Toni ran the marathon for a charity and this is my way of paying it forward and trying to bring some comfort to lovely Ebony.

I would appreciate it if you can sponsor me a few pounds and together we can get Ebony a new bed as her bed is currently broken and causing even more discomfort, and potentially help with the bigger plan of getting her to the US where she can get the care she needs.

Below is some information about EDS and what Ebony faces, which is what I first read, I hope this will touch you as it has me and we can help Ebony!

Ebony's Story

In 2009, Ebony was eventually diagnosed with type 3 EDS (Ehlers Danlos Syndrome) a rare genetic connective tissue disorder. Despite the diagnosis, we were told there was no cure. This news was devastating to the family but not more so Ebony who was at a pinnacle of her life where she should be making the life plans normal teenagers and young adults do. However, it was said with a glimmer of hope for us as a Family that her symptoms could be managed to give her a better living of life. To date, we have not seen this improvement in living. Ebony is now 29 years old and as you can all imagine the pain she is going through here is a list of just a few!

Abdominal pain

Ovarian Cyst operation x2

Hernia x2

Atonic bladder

Intermittent catherisation

Super pubic catherisation

Atonic bowel

Faints & Seizures

Dislocations

Low immune system

Illiostomy (Stoma bag)

Collapsed veins

POTS- Postural Orthostatic Tachycardia Syndrome-symptoms (yet to be officially diagnosed)

NJ tube and Hickman Line for medication and nutritional feed

Chronic Pain

Chronic wounds

CSF leak Cerebro Spinal fluid leak which causes Persistent Migraines and contributes to the seizures

Nerve damage due to extensive use of entenox used for pain control (lifetime effects of nerve damage)

Blood poisoning

Hyper sensitive skin

Loss of teeth

Pseudo obstruction (problems to eat and digest solid foods)

Drug absorption difficulties (has to have triple dosage of medications)

Periods of Loss of speech

Periods of loss of eye sight

Periods of loss of hearing

Paralyzation of face

Numbness of limbs

Wheelchair user

Ebony has NO quality of life. Understandably Ebony sees no pain free life ahead for her. However, we do admire ebony for her strength as she always is smiling and looking ahead, sometimes we tend to draw our strength from her and her courageousness to fight on.

As you know, this pandemic has put a strain on the NHS, which has caused a ripple effect on Ebony’s care. The reason for this page is just to make Ebony as comfortable as possible hence why we would like to raise funds for her to get a new bed as she spends the majority of her time in her bed due to ill health, her new bed will assist her needs in terms of her daily struggles with joint weakness, dislocations and chronic pain.

Despite the fact we know there is no cure we know that there is a better quality of life out there for her but the barrier we face is that it comes at a cost.

We appreciate that at this time the world is suffering and feeling the effects of a world pandemic, we just hope Ebony’s story and many who are and have suffered similarly to her are not forgotten. When we return back to “normality” as we know it for many will still be in the same or worse situation than before.