I just want to share a couple of stories with you that both centre on young ladies living with types of EDS. Of course these pieces always jump out at me, but I believe that whether you have EDS, another chronic illness or are reading this as, hopefully, a fit and well body that these stories will raise a smile!
The first features a beautiful 11 year old and her canine best friend,
At just seven years old, LanDan Olivia was diagnosed with Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome. The effects of these syndromes make it hard for LanDan Olivia to stand on her own and often restrict her to a wheelchair.
But LanDan Olivia doesn’t feel restricted, and that is in big part due to her assistance dog and best friend Perkins, who keeps the 11-year-old smiling and active every day.
“I was in my wheelchair, and it was really hard to get around, and open doors and drawers, and close them, and I would drop things and couldn’t pick them up. Sometimes even emotionally, I also felt like I needed help with things that a person could not understand,” she told PEOPLE. “Perkins just feels me. I needed someone like Perkins in my life.”
After two years of waiting, LanDan Olivia received the call she’d been dreaming of from Canine Companions for Independence, an invitation to Team Training. There, Perkins was waiting to meet his future owner and best buddy, having already gone through a year and a half of basic training, so they could begin working on a relationship that catered to LanDan Olivia’s specific needs.
To read the full story visit Working Dogs
My second story features Vascular Ehlers Danlos Syndrome, which is probably carries the highest risk of fatality. Planning to start a family when you carry a genetic condition is a minefield ordinarily, but if the pregnancy itself could put the mother’s life at risk due to said condition another can of worms waits to be opened. This is how one couple coped.
Leyla was desperate to be a mother, but being pregnant could kill her… Which is why she used a surrogate even though she’s able to conceive
- For Leyla Hutchings it was not infertility that drove her to surrogacy, but the fact doctors had told her she would risk her life by carrying a baby
- Baby Zeki was born to his surrogate mother Rachael Coleman in
- 400 surrogate babies were registered in UK in 2016 – four times 2011 statistics
When Leyla Hutchings takes her three-year-old son Zeki to see his ‘Auntie’ Rachael, he’s always excited to play with her three children, whom he treats as his cousins.
Yet their relationship is much more complex than that.
They’re not genetically related, but Zeki has a lot in common with Daisy, nine, Jack, seven, and Max, five. For ‘Auntie’ Rachael is not a biological relation — she simply gave birth to him.
Zeki is a surrogate child, the result of a sympathetic mother’s urge to help another woman have a child.
For Londoner Leyla Hutchings (pictured with surrogate mother Rachael Coleman and baby Zeki) doctors had told her she would risk her life by carrying a baby
Last year, 400 surrogate babies were registered in the UK — nearly four times as many as in 2011 — due mainly to increased awareness that surrogacy is a possibility for childless couples.
According to the charity Surrogacy UK, common reasons for using a surrogate include repeated miscarriages, failed IVF treatments or early menopause, often as a result of cancer treatment. And one in 5,000 women has no womb or cervix.
But Leyla’s case was different — it was not infertility that drove her to surrogacy, but the fact doctors had told her she would risk her life by carrying a baby.
At the age of 26, she was diagnosed with an aneurysm — a bulge in a major blood vessel, in her case in the leg, which, if it burst, could cause fatal internal bleeding.
Leyla was on the Tube on her way to work at a London law firm when she collapsed with sudden pain. Rushed to hospital, she was diagnosed with vascular Ehlers-Danlos syndrome (EDS) — a rare genetic condition.
I hope that these stories have brought a smile to your face.