Help Jane & Rosa battle CCI/AAI
The way to a better life
Help Jane & Rosa battle CCI/AAI on their
way to a better life
Or should I say the way to a life. Because the life my daughters live at the moment can hardly be described as living. It is more a “struggle yourself through the day towards again another day that you have to survive” type of life. My daughters have the Ehlers Danlos syndrome, the hypermobile type (hEDS). Furthermore they have been given the diagnosis Postural Tachycardia syndrome (POTS) and Myalgia Encephalomyelitis (ME). And, as we recently found out after an upright MRI in London, Crania cervical instability, Atlanto axial instability, hindbrain herniation and one of them is not far from brain stem compression.
Jane is almost completely restricted to home, Rosa is still able to work 3 hours 3 times a week as a cashier in a supermarket. Which contains that the rest of the time she needs to lie down and that sometimes she doesn’t make it to get home after work.
But there is hope, hope to stop or even reverse the downward spiral the girls are in. And that can be accomplished by an operation; an operation by a neurosurgeon in Barcelona, the only one in Europe. .
I am asking your help to raise the amount of € 150.000,00. The amount needed to cover the costs of the operations, the insurance of possible complications and the travel and accommodation costs.
In the media
12-10-19: AD.nl/Westland – Operatie moet doodzieke zusjes redden: ‘Ik kan niet wachten om weer naar school te gaan’
10-10-19: AD Den Haag – Gevaarlijke Spaanse operatie moet zieke zusjes redden
10-10-19: AD Westland – Levensgevaarlijke operatie in Spanje moet zieke zusjes redden
08-10-19: AD/regio Westland/indebuurt – Operatie moet doodzieke zusjes redden: ‘Ik kan niet wachten om weer naar school te gaan’
06-09-19: Westlanders – Naaldwijkse start crowdfundingsactie voor operatie ernstig zieke dochters
Help us gather the amount of €150.000,- for both surgeries
IBAN: NL15INGB0006177292 – BIC: INGBNL2A – att. Stichting Help Jane & Rosa battle CCI/AAI – KVK: 75373009
Jane & Rosa
Rosa, the youngest, is now 19; also in and out of hospital. She was a tomboy and all her little accidents and injuries were connected to that. Rosa was a sporty girl who loved nothing better than to be outside or to sport. Before it really went wrong she sported 14 hours per week, attended the sports class of secondary education HAVO/VWO, football, baseball, skating, she loved it all. Until is became really impossible and eventually in 2014 she was diagnosed with hEDS. A year later followed by the diagnoses POTS and ME. This picture is also from better days.
Jane, the oldest one, is 20. Since the age of 6 diagnosed with migraine, always in and out of hospital, intestinal problems, lots of pains but they never found anything. Knee problems, luxations and eventually an operation to block her patella. Problems with the bladder, incontinence and retention, an operation to control the function of the bladder through a neurostimulator. When Rosa was diagnosed with hEDS in 2014, all her complaints came into sight and not long after she was also diagnosed with hEDS, POTS and ME.
“When you hear the sound of hooves, think horses, not zebras.” In medicine, the term “zebra” is used in reference to a rare disease or condition
When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome are identical.
i miss my life
My life has changed so much over the last few years. I used to go to school, hung out with friends and had a job working behind the counter and yes I was/am chronically ill, but I was still able to have a somewhat normal life, which is no longer possible.
My health has continued to go downhill pretty quickly, especially in the last 6 months. I am able do to way less of my everyday normal activities. I’m not going to school anymore, simply because it’s too exhausting and I lack concentration (let me just tell you, it took a lot of breaks for me to finish this text. I no longer have a job, the long work days combined with the long periods of standing were too much for me. When I fainted during my workday it became painfully obvious that I was no longer able to keep on working there and that I asking too much of my body. I barely hang out with my friends anymore, because it costs me too much energy. As a result, I hardly see anyone anymore and I feel like I’m isolated from the world. I miss my old social life, I miss going to school, I miss hanging out with my friends and staying awake all night laughing. I miss my old life and I want it back!
Help Jane & Rosa battle CCI/AAI on their way to a better life
IBAN: NL15INGB0006177292 – BIC:INGBNL2A – att Stichting Help Jane & Rosa battle CCI/AAI – KVK: 75373009