My name is Joy Caesar, I am born and raised in East London. I am 32 years old with 2 adorable kids. All the kids and I want is to be able to play and share pain free memorable moments with my one and only sister and their only Aunty Ebby.
Ebony Hope is my only sibling. Ebony went to school in the East End of London and was a popular, fit and healthy teenager. When Ebony turned 14 years old she experienced a drastic change in her health. Ebony was unable to complete her education as her new classroom became various Doctor’s appointments and hospital wards as medical professionals were unable to identify the sudden deterioration in Ebony’s life. Ebony was unable to enjoy a “normal” teenage social life and being a member of a big extended family was also unable to enjoy many family events and had to look on and see family, friends, peers and cousins hit certain milestones, achievement and fulfil dreams and ambitions that she is unable to do. Ebony’s suffering began with excruciating abdominal pain resulting in many A&E visits in which doctors were unable to identify the source. Despite her first of many operations to follow for an ovarian cyst, the pain continued which baffled doctors so much so that they believed that Ebony was lying.
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 more so for Ebony who was at the 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 quality of life. To date, we have not seen this improvement in living. Ebony is now 25 years old and over the last 11 years, my sister has gone through some unimaginable experiences which are briefly listed below. (The list is endless so I will try and summarise as best I can).
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)
Chiari Malformation symptoms
(Yet to be officially diagnosed)
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 poisioning
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
Paralysation of face
Numbness of limbs
Wheelchair user
Ebony has NO quality of life. Understandably Ebony sees no pain free life ahead for her and with the list above would you? However, I have to take time to commend her daily efforts to put a smile on her face and face each painful day, and try to be the best daughter, sister and aunty she can. If anything, we sometimes draw strength from her courageousness to fight on.
All I want is for my sister to be able to have a pain managed life where she is able to at least fulfil some of the basic things in life, which we all sometimes take for granted. She just wants to be able to use her brain without experiencing pain. More upsetting than this, is that visually at times, Ebony looks and appears to be well but this is far from the case as on the inside her body is deteriorating at a rapid pace. Ebony’s life is confined to her bedroom as the pain and seizures do not allow for her to mobilise the majority of the time.
At present Ebony needs round the clock care which is provided by my Angel of a Mum, June, whose life stopped the day her daughter got ill. My mum is Ebony’s full time carer, nurse, confidant and at times only friend.
My wish is for both to be able to live a life with myself and my kids as a family and create memories not based in a hospital or bedside watching her in pain wishing her life away, if she has to live life in this pain for much longer.
It has taken a lot for me to write this and ask for your help in the on-going search for a pain free life for Ebony, my baby sister.
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.
I want to raise money and to be totally honest I am not sure how much…but the starting point is here!
I need your help to cover the costs for:
Dr Clair Francomano. Photo courtesy www.ehlers-danlos.org
Trips to annual EDS conference (USA) which provides a support network of people who understand EDS
Medical Insurance (USA)
Private Consultations (USA)
Private Scans (USA)
Second medical opinions (USA)
Appropriate testing for more specific treatments for each symptom caused by EDS
Pain Management
Veneers
Living costs
My first aim is to get Ebony to the next annual EDS conference in the USA which is in July this year (2016).
Fact: A new centre for EDS research was just created in Baltimore, MD. They offer clinical care, education for Physicians and research. It is led by the beloved EDS Superstar Dr. Claire Francomano.
My sister has lost all will & hope and by you giving whatever you can spare, no matter how big or small, could make all the difference to her seeing a positive outcome to on-going fight for life.
“The smallest act of kindness is worth more than the grandest intentions” Oscar Wilde.
How grateful would I be if you donate? Well I cannot put a price on my Sister’s life so any donation to us is a blessing.
THEY CALL EDS THE INVISIBLE ILLNESS BUT I WILL NEVER ALLOW MY SISTER’S PAIN AND SUFFERING TO BE INVISIBLE!!!
Raising awareness for all of the EDS sufferers out there. http://www.ehlers-danlos.org/
Thanks for taking the time to acknowledge Ebony’s cause.
Joy x
For more info on the condition EDS please click on link:
http://www.buzzfeed.com/zebrazebrazebra/31-random-facts-about-ehlers-danlos-syndrome-v5ff#.olRWZqlJe
TO HELP EBONY CLICK LINK BELOW
