Stories

Over Long Health Journey, CaringBridge Becomes Family’s Blog

Scott Family

The Scott Family of Jupiter, FL: Toby, left, Abby, Jennifer and Charlie.

In January 2008, during a 26-week prenatal check, my husband, Toby, and I learned that the right femur of our future daughter appeared to be half the length of her left femur. Though we didn’t have a name for it at the time, we learned after her birth that she had an extremely rare condition called Congenital Femoral Deficiency. I would later learn this condition affects only 1 in 150,000 births.

Our Abigail Hope arrived 3 months later, a feisty redhead from the start. Little did we know how much Abby’s strong spirit would matter in what is now a 10-year quest for our girl to have two feet on the ground.

CaringBridge as a Constant

The journey would be long, as Abby’s predicted discrepancy at maturity was 11 inches.

But through major hip and knee reconstructions and leg-lengthening surgeries that are just as painful as they sound, Abby’s motivation and wish for independence continue to shape this challenging journey.

Abby at age 2

Before her first surgery, at age 2, there was a 4-inch difference in the lengths of Abby’s left and right legs.

And every step of the way, CaringBridge has been our constant.

Abby was a chunky-thighed little ginger when I started writing in July 2009. We were living in Texas at the time, where I was associate pastor at a United Methodist church.

Nine years, 468 CaringBridge Journal posts and a family move to Florida later, our girl is doing kids’ triathlons and running 5K races with her “helper leg” (an extension prosthesis).

She swims and is quite the young gymnast. She loves sewing and crafts and dreams of one day becoming a veterinarian. Right now, it’s all about horses, but there’s no animal that Abby does not find interesting.

Abby’s health journey also resulted in career changes for my husband and I. While her care in Dallas was wonderful, and our family had put down roots in Texas, we ultimately moved to Florida to be closer to specialists with the most experience and success in treating Abby’s very rare condition.

Roller Coaster of Emotions

No doubt, a move like this involved a level of sacrifice from our whole family. Toby and I had jobs we truly enjoyed, and leaving Texas meant starting over for our son, Charlie, too. It was not easy leaving family and church friends.

But relocating our family made it easier for Abby to become a patient at the world-renowned Paley Orthopedic and Spine Institute at St. Mary’s Medical Center. Their specific expertise is in limb-lengthening and deformity-correction of extremely rare conditions.

When we moved to Florida, I became a patient and family care coordinator at the clinic. I miss the local church ministry, but each day I am blessed to share my passion and love for children and patient families just like ours.

From our personal experience—Abby had her seventh surgery in July 2018—and from working with other families from around the world, I can tell you that deformity-correction and limb-lengthening is a roller coaster of emotions.

You weep, you worry, you feel guilty. You wonder if you have chosen the right path for your child. But with each improvement comes celebration for a hard-won victory.

Keep Our Eye on the Prize

I see, too, that God gives you the right people in your family and friends with wisdom and assurance when you need it most. These people remind us to keep our eye on the prize.

Like most families in the midst of health journeys, we are blessed to have an incredible medical team and a physical therapy team, in Abby’s case. It truly takes a village to gain every centimeter of new leg-length.

Abby Scott

Abby hula-hooping in August 2018, shortly after a surgery expected to reduce her overall leg discrepancy by 2 inches.

I have seen the power of our village through nine years of writing on CaringBridge. My family is so grateful for all of the love and support that still carries us. Even so far away from family in Texas and also Oklahoma, we are connected through CaringBridge. Abby’s site is followed by friends from across the United States, and the world, who offer their prayers.

Our Abby is now fully entrenched in fifth grade, and excitedly serving as a safety patrol for the little ones. So hard to believe. Where did our baby go?

We would like CaringBridge to be our daughter’s record of the thousands of prayers that have been said on her behalf, and the calm words of love and support that keep us going. So I still write.

The other day, our son, Charlie, an eighth-grader, asked me, “Mom, how long do you plan on keeping this up? Will you write until Abby’s leg-lengthening is complete?” I answered, “Maybe I will keep updating CaringBridge until she marries and has kids!”

Feel the Impact

Thanks to an anonymous supporter of CaringBridge, donations to CaringBridge will be doubled, up to $15,000, September 26 and 27. Help make CaringBridge possible for the next family that needs support.

Here’s a link below to make sure your donation gets doubled. CaringBridge is there for us now when we need support. We want it to be available to everyone.

Donate to CaringBridge

New to CaringBridge and Wondering What We Do?

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health crisis through the use of free, personal websites. Know someone who could benefit from starting a CaringBridge site to keep loved ones informed and get the love, and support they need?

Learn more

Jennifer Scott, wife, mom and ordained deacon in the United Methodist Church, has been writing on CaringBridge since 2009. She hopes that the surgery Abby had in July 2018  will be the last one for 4 to 5 years. The dream is for Abby to have both feet on the ground after a final leg-lengthening surgery at maturity.

Comments (22)

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Katherine Smith Sep 25, 2018 12:09am
My niece had this disease and had her arm and leg lengthened. I am happy to share that she is now happily married with a child and one in the way. She graduated from Georgia Tech. I am very proud of her
Robyn Lambert Sep 24, 2018 5:17pm
Amazing lady
Portia Mckinney Sep 24, 2018 10:01am
Thanks for sharing your story. May God continue to give Abby the strength to keep going until both feet are on the ground. My prayers are with the family.
Tina Sep 23, 2018 9:24pm
Abbey will turn out wonderful when she is all done. ❤️Your friends from Nebraska 😁
Sharon OBrien Sep 22, 2018 7:20am
Thank you for sharing your story. I will add your family name to my prayer box. God is good.
Eileen Sep 22, 2018 12:21am
Prayers and Happiness to Abby and your whole family Thanks for sharing your story. Caring Bridge is a amazing site. My family has used it many times, a sister(Colleen) a niece STEPHANIE and many family and friends.I have a grand daughter Lilly who is special , born with translocation of 2 chromosomes She’s 10. 5th grade I love her so much !!!my special girl ❤️🌈
Marilyn Morris Sep 22, 2018 12:19am
I think your family has learned to be very strong to support the lovely redhead you gave birth to. The accomplishments you and she have achieved along your faith journey have been amazing and substantial. Children always put adults to shame with their small expectations, yet steely courage. I see this when I worked with crippled children. They are so grateful for every small accomplishment. I wish you courage and grace for whatever is ahead, knowing with God and faith, our accomplishments will be amazing. He has granted me the strength to live many times, when medical scientists had given up on me. God Bless you and your lovely family for all the days ahead.
Rose Marie Mahfood Sep 21, 2018 8:14pm
I have just read Abby's story and have been deeply touched by all that your whole beautiful family have been through. May God continue to bless Abby, Charlie, Mom & Dad abundantly and to "complete the work that He has begun in you".
Florence Simpson Sep 21, 2018 8:03pm
My comments would echo Espie's comments. Thank you for sharing. Caring Bridge allowed my daughter, Paula Pike to share her faith on her journey with Stage 4 Lymphoma. She was very special.
Nina A Sep 21, 2018 4:41pm
Aloha! Beautiful Story. God bless your ohana.
Kit Waychoff Sep 21, 2018 3:07pm
Jennifer, I dont know if this came to my email by chance, but the minute I saw your name and the sentence about your redhead, I knew it had to be..... then when I saw a grown up Charlie, my heart ❤️ jumped! I’m so thankful I got to hear first hand how your family and especially your Abby is doing! GOD is blessing so many through your journey, and I am very grateful I had the privilege of being a small part of Charlie’s life! I pray His grace and mercy will be with you all as you continue on this journey together! Blessings,
Michael Fleming Sep 21, 2018 2:56pm
Abby, we don't know why things happen to such good people like you. But God has a plan for each of us. For some reason, this is part of His plan. God listens to prayers and I will make sure He hears mine for you. Keep up your courage and tell your mom she is one terrific mom. I am sure your whole family is great too. I hope to be reading some great stuff about you in the future. God bless, Mike Fleming & Family
Jennie Wiebe Sep 21, 2018 12:03pm
Thanks for sharing keep it up!
Espie Teman Sep 21, 2018 9:00am
I’m so happy to hear about Abby’s journey! God is our Healer and you are in the midst of God’s healing process! I love to see her doing the Hula-hoop with ease! Thank you for sharing and initially starting Caring Bridge Organization! It has helped a lot of people!
Brenda B Watson Sep 21, 2018 8:12am
What a wonderful family story, thanks for sharing. You go Abby, nothing can stop you with such a wonderful supportive family behind you and God on your side.
Maria P Salazar Sep 21, 2018 7:57am
Un gran abrazo para Abby, sus padres y hermanos. La vida nos pone en circunstancias difíciles pero confiando en Dios, todo va saliendo adelante. Fuerza familia de guerreros.
Esther Chait Sep 21, 2018 7:45am
Abby seems to be a delightful kid who is ful of personality. Without going into detail as I don’t really like talking about it, I also have a problem with a leg. Yes it’s affected my mobility but no it has not affected me in any other way. My Mother always said to me that I can do whatever I set myself up for and she was right. I am telling you this because I know that Abby can also do anything and everything. Lastly although it is non of my business, I strongly advise you never ever to let anybody operate or do anything at all on her good leg. That leg needs to be left alone. Stay strong. All will be good.
Randy Pendergrass Sep 19, 2018 8:50pm
Thanks be to God
Patricia Francoforte Sep 18, 2018 11:08am
I have met this beautiful little girl and her family! Absolutely amazing people!
Mary Ellen Desjardins Sep 18, 2018 10:26am
I was born in 1940 with a right femur shortness, knee is not completely normal either...at one point in my early years there was an 8 in discrepancy. Had numerous surgery’s at Chilfrens Hospital in Boston, Mass, to both lengthen my leg and straighten it. Wore a long leg brace till 6th grade and then shoe with lift. In adulthood have had 3 hip replacements. Has never stopped me from doing most things...married 56 years,4 children and 10 grandchildren. Pretty active in my old age too!
Jane Davis Sep 17, 2018 4:20pm
Just want you to know I am thinking of you and hold you in my thoughts and prayers------- We had some memorable times over Oreo cookies and the oinking pink-pig cookie jar. The children would say, "Poppies here", when we would hear the "oink"! Know you brought great joy to them (all of us) with your Oreo sneaking endeavors. With love and prayers, Jane
Kathy Byrne Sep 12, 2018 12:54pm
My son is just beginning this journey at the age of 12.5. He has a femur flexion deformity as a result of an ACL year when he was 9. His growth plate was permanently damaged and now his leg is shorter than the other as well as having this femur deformity. This will be his 5th surgery. I am so worried about the surgery. He just wants to be a normal kid. Heartbreaking to watch him suffer for so long. Best of luck to Abbey.