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Shea’s Story

What we thought were simply childhood dislocations, growth spurts, and hormonal migraines turned out to be so much more.

Disability, inability to drive, unable to stay home alone for any length of time, use of a wheelchair at times, the need for a service dog, and now the possibility of a brain surgery or 2.

A little less than 3 years ago, our world began to take a roller coaster ride, with Shea in the front seat. Little did we know that what we thought were occassional dislocations years ago would turn out to be a rare connective tissue disorder that affects 1 in 5,000 people. It's called Ehlers Danlos Syndrome. (EDS)

After a constant decline in Shea's health as well as the lack of local physician's knowledge of EDS we called Dr. Clare Francomano in Baltimore, Maryland. She is a geneticist and an expert in EDS. She has done years of research on EDS.

This 3 hour appointment was very informative and educational for both Shea and I. First of all she said that Shea had Classical EDS not just hypermobile as we had first been told.

Then she went on to explain that she believes ALL Shea's health issues;(seizures, blurry vision, numbness and wealness in hands, legs and feet, severe back of the head pain, neck and back pan, gagging reflex. her body's inability to control it's temperature, lack of grip strength in her hands, migraines, loss of memory, inability to think clearly plus all her stomach issues) can be contributed to the fact that she has Cranial Cervical Instability (CCI), along with the possibility of her having something called Chiari.

The CCI was verified as she gets some mild relief once her head is lifted up off her spine. It is made worse by pushing down on top of her head.

The doctor's plan: for us to get Shea to The Chiari Institute(TCI) in Great Neck, NY for further eval. To get an Aspen collar for her to wear as well as a Pronex traction unit for her to use. The traction and Aspen collar do help with her back and neck pain and gives her some relief from the pain in the back of her head. These are other 'sure' signs of CCI.

I have CCI, EDS, Chiari, None-Epileptic Sezures, Arthritis, POTS, Congenital spinal Fusion, Degenerative disks, Osteoporosis, IBS, Asthma, TMD, and Gastroparsis.

I have had 21 surgerys in all (1989-2008)

You may 'wish' there was something you can do. There is, you can pray for Shea and our family as well as the doctors that will be seeing her and working with her.

We covet your prayers, Thank you, Shea

Latest Journal Update

Orthopedic Update

Onanother note, her Orthopedic said that the MRI on her wrist showed she has atorn cartilage in her left wrist, (although he did take the cast off so she canenjoy vacation), but told her to wear her very supportive wrist brace while on the cruise.  

Andthe MRI on her knee showed that she does have excessive inflammation and possiblestress fractures on her femur. He said since its a stress fracture, she willneed to use her wheelchair on the cruise and have a CT scan after the cruise.He did give her a cortisone shot to help ease some of the pain and help decreasethe inflammation, (he hopes).  Dependingon the extent of the stress fracture will determine what he does, if anythingbesides limiting her to her wheelchair ONLY for 6 weeks.

Rightnow she is VERY TIRED and not resting well at night, so she falls off to sleepquite easily during the day, please pray that she will get the needed rest nowand while on the cruise, but most importantly that she will be able to enjoyherself and her friend Gwen.

Staywarm everyone, we will think of you while swimming in the ocean and relaxing in85+ degree weather.

Continuedprayers are greatly appreciated!!!