Saturday, July 11, 2015

Asking for Prayers, Good Vibes & Cards For a Special Girl

It’s no secret; authors have two soft spots – shelter animals and kids in need. I'm taking a break from the normal fun-love-sex-romance on the blog to ask a favor... prayers & cards for a special young lady who is like a niece to me. Let’s shower her with cards and well wishes as she fights with complications due to a rare disorder.

Author & Editor of Painted Soul
I was lucky to grow up in an amazing neighborhood and made friends who are still with me today. When I was a year old and 2 year old girl and her family moved into the house across the street from me. She and I have been sister-like pals since. Yes, this is the same gal who traveled to England with me when I was 16 and wrote the first draft of Painted Soul.
Yep… same gal who was the editor on Painted Soul a kazillion years later.

Tricia and I always thought we'd marry handsome men, have beautiful children, and live across the street from each other. We acomplished the first two, but life decided to put Wisconsin between us instead of a street. Over the years, I loved her visits to Michigan and looked forward to taking my boys to Minnesota to visit her, Steve and the girls.

In 1999 we were excited to find we were pregnant “at the same time”. 2000 blessed us, Trish had a little girl in June, I had a boy in July. That summer she came for a visit. I’ll never forget holding beautiful Gabby while she held my Devin and she told me some devastating news.

Gabby was born with a rare disorder that doesn’t allow her to feel pain. It's called congenital insensitivity to pain with anhidrosis (CIPA). At that time they know of only a few documented cases in the world and life expectancy was not long. After Tricia and Gabby left, I sat at my son’s bedside. I caressed his soft head and cried. Here I had a healthy boy while my best friend’s sweet little girl might not live long enough to attend pre-school. In my heart I knew my friend was strong enough to fight for her precious babe and to give her the best life possible. I was sure Gabby would have her mother's determination and faith.

Tricia's family is full of love, their generosity and spirit are boundless. They have done everything they can to create a normal life for Gabby, while still giving their time and energy to build a global support network and foundation for families in need. See more on their website Gift Of Pain

Because of their carefully selected public appearances, they have brought CIPA to the public. Through education and networking they have found and connected with more people who have it. There are now 100 documented cases in the world. Patients with the disorder are now being connected with talented doctors. Our hopes are to continue networking and increasing the quality and expectancy of these precious lives.

Here is the one of the first features they did... a story featured on 20/20:

This is the most recent apearance in a follow-up program on Oprah shot in 2014:

This is the original piece on Oprah shot in 2005:

 See a trailer for the documentary produced by Melody Gilbert:

Her family has spent a lifetime managing Gabby’s condition. She's now 15, a lively high school student; a top student with a witty sense of humor. Gabby enjoys being outside and hanging with her BFF. She has a huge heart and loves animals. Gabby even managed to convince her mom who is allergic to cats to let her adopt one! When she visits our house, she has to hold Maxwell the guinea pig right away then love up the two dogs. She's going to go crazy when she meets our new cat!

 Because of feeling pain, Gabby has broken many bones including her back. Gabby's 15th Birthday was June 9th and on the 10th she had an 8-hour back surgery. It was her fourth back surgery in two years. Last December she had a spinal fusion but soon developed numbness from her shoulders to her knees.

 The goal of the June 10th surgery was to take out loose screws in the top vertebrae and culture it out for infection. When the surgeons got in there the damage was much worse than they had thought. The top screws had pulled out, ALL screws were loose and very little healing from the December surgery. There is the possibility some of the screws may have caused some permanent damage to the spinal cord. There is a dark cloud of Gabby never walking again, but we don’t think her nature is going allow that to happen. The goal now is to preserve her ability to walk.

 Over the next 6 (maybe longer) Gabby will be going through more surgeries at the Mayo Clinic in Rochester, MN where Gabs has been treated several times she was first diagnosed. The folks at Mayo have grown to know and love her. Unfortunately, Gabby will be 2.5 hours away from her home in Elk River, her beloved cat and sister. Her dad will visit when he can, while Tricia will stay with her.

This family has given so much to help others. Friends of the family decided to help them. There is a Go-Fund-Me account set up to raise money for the family. Her family will rent a place as a “home away from” so they may be with her. There will be travel expenses and unforeseen bills to be covered. Any funds remaining after Gabby is back home will be donated to the foundation and used to provide a fund for other families, like theirs, who need assistance with an unexpected expense. If you’d like to help visit 

 Gabby's sister, Katie, has been the best big sister ever. She just graduated high school with high honors and is planning to college this fall. Steve is a longtime grassroots motorsport participant -- a driver and steward in Rally America. Trish is a stay-at-home Mom who cares for her girls while still finding time to contribute to the community and manage the Gift of Pain foundation. Tricia doesn’t edit as much as she used to, but she’s always there to be a sounding board if I need her for me. I would never be the writer I am today without her help in the beginning.

Please keep this sweet Gabby and her family in your prayers. 
Light a candle. 
Send healing vibes. 

Tricia’s sister and I are asking people to send Gabby a card or postcard – any kind will do, to show that people are hoping for her recovery.
Tell Gabs you are a friend of her Auntie Mary! Thank you!

Mayo Clinic Hospital
St. Mary’s Campus
Attn: Gabby Gingras Rm. MB 8-584
1216 Second St. SW
Rochester, MN 55902

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