16 Yr Olds Brave Fight with EDS
Donation protected
A Massachusetts family needs help to cover medical and travel expenses to help their 16 year old daughter continue her treatment.
The Richards Family has done so much to help kids living with Ehlers Danlos Syndrome, Complex Regional Pain Syndrome and complex pediatric pain conditions. Advocating and setting up a non-profit organization to support families, bringing physicians together to discuss research and treatment options, and always being available to offer advice or help to families in crisis. But 2015 has been a year of crisis for the Richards, as 16 year old Karen Richards has undergone 6 surgeries in the last four months that were necessary to save her life.
Anyone who has a child that lives with a rare or a complicated medical condition knows, that it is not uncommon to have to travel to get experienced medical care.
At age 16, Karen Richards is a medical mystery to many, and has been turned away, denied surgery and even treatment from physicians at top hospitals who felt she was too complicated to effectively treat her. She has Ehlers Danlos Syndrome, POTs, Dysautonomia, Idiopathic Intracranial Hypertension, Mitochondrial Dysfunction, Complex Regional Pain Sydrome, Mast Cell Activation disease and lives with pain, and daily challenges that would keep most people in bed. Yet she keeps pushing forward and with a smile.
In June, Karen underwent her second cervical fusion (first one was from Skull to C2 back in November 2013), to correct cervical instability that was causing her to pass out at random on the MBTA coming home from her high school in Boston. Because she was so unstable between C3-C4, she would randomly pass out or be unable to move due to certain natural neck movements. These neck movements were compressing vital vessels and her spinal cord. This time she was fused from C2 to C5 joining the prior fusion to this one. Although her life was in jeopardy without the two fusions, her Boston neurosurgeon was unable to do the procedure due to her age and debate around fusions, so her family had to take her to Washington DC to see an adult spinal surgeon familiar with the severity of EDS and neck instability.
This fall, it was discovered that the headaches, neck swelling and almost daily anaphalaxis that she was experiencing turned out to be a complete blockage of her left jugular vein and severe stenosis of other veins in her brain combined with an allergic reaction to her shunt tubing which was in place to control her high intracranial pressures. This time, the family had to take Karen to the University of Virginia where a neurovascular surgeon performed delicate brain surgery to stent her narrow vessels and remove her lumbar peritoneal shunt. Unfortunately, as Ehlers Danlos can cause problems with healing, Karen continued to leak spinal fluid and had to undergo 3 more surgeries and a lumbar drain placement to heal the spinal leak caused by her fragile connective tissue that had been holding the shunt in place.
Karen is happy to be out of the hospital for Christmas even though she remains on a picc line. Her parents are preparing for the ongoing battle that lies ahead. The travel expenses have really impacted the family. Any donations would be greatly appreciated to help them continue to get Karen the care that she needs. The care that all complex EDS kids deserve.
Thank you!
The Richards Family has done so much to help kids living with Ehlers Danlos Syndrome, Complex Regional Pain Syndrome and complex pediatric pain conditions. Advocating and setting up a non-profit organization to support families, bringing physicians together to discuss research and treatment options, and always being available to offer advice or help to families in crisis. But 2015 has been a year of crisis for the Richards, as 16 year old Karen Richards has undergone 6 surgeries in the last four months that were necessary to save her life.
Anyone who has a child that lives with a rare or a complicated medical condition knows, that it is not uncommon to have to travel to get experienced medical care.
At age 16, Karen Richards is a medical mystery to many, and has been turned away, denied surgery and even treatment from physicians at top hospitals who felt she was too complicated to effectively treat her. She has Ehlers Danlos Syndrome, POTs, Dysautonomia, Idiopathic Intracranial Hypertension, Mitochondrial Dysfunction, Complex Regional Pain Sydrome, Mast Cell Activation disease and lives with pain, and daily challenges that would keep most people in bed. Yet she keeps pushing forward and with a smile.
In June, Karen underwent her second cervical fusion (first one was from Skull to C2 back in November 2013), to correct cervical instability that was causing her to pass out at random on the MBTA coming home from her high school in Boston. Because she was so unstable between C3-C4, she would randomly pass out or be unable to move due to certain natural neck movements. These neck movements were compressing vital vessels and her spinal cord. This time she was fused from C2 to C5 joining the prior fusion to this one. Although her life was in jeopardy without the two fusions, her Boston neurosurgeon was unable to do the procedure due to her age and debate around fusions, so her family had to take her to Washington DC to see an adult spinal surgeon familiar with the severity of EDS and neck instability.
This fall, it was discovered that the headaches, neck swelling and almost daily anaphalaxis that she was experiencing turned out to be a complete blockage of her left jugular vein and severe stenosis of other veins in her brain combined with an allergic reaction to her shunt tubing which was in place to control her high intracranial pressures. This time, the family had to take Karen to the University of Virginia where a neurovascular surgeon performed delicate brain surgery to stent her narrow vessels and remove her lumbar peritoneal shunt. Unfortunately, as Ehlers Danlos can cause problems with healing, Karen continued to leak spinal fluid and had to undergo 3 more surgeries and a lumbar drain placement to heal the spinal leak caused by her fragile connective tissue that had been holding the shunt in place.
Karen is happy to be out of the hospital for Christmas even though she remains on a picc line. Her parents are preparing for the ongoing battle that lies ahead. The travel expenses have really impacted the family. Any donations would be greatly appreciated to help them continue to get Karen the care that she needs. The care that all complex EDS kids deserve.
Thank you!
Organizer and beneficiary
D Sullivan
Organizer
North Kingstown, RI
Aurora Richards-Stipnieks
Beneficiary