Clar by blue wall

Dec 22, 2020 / Prosthetics & Orthotics

Share Your Story: Butterfly Blessings

Meet Bel and Clar, patients seen by our multidisciplinary team of experts. Learn more about their journey below.

Blog written by Bel and Clar's mom, Vicki of Maypearl, TX.

Bel was no stranger to the hospital or the doctor offices, as she was in and out of both her entire life. She was born with clubfeet, bilateral radial dysplasia and was missing her thumbs. She became a patient at Scottish Rite for Children when she was just 3 weeks old. By the time she turned 1, she had been in the hospital more than she had been out of it. 

The countless tests, blood draws, exams and procedures seemed like it never ended. When she was just 18 months old, bacterial meningitis kept her in the hospital for over a month. This was an extremely scary time, yet I view it as a hidden blessing because this is also when we learned that Bel had pituitary dwarfism and hypothyroidism. She recovered from the meningitis without any side effects and once we were able to get her growth hormone and thyroid issues under control, her health began to increase. Bel started to grow and even remained out of the hospital for a while. Bel’s strength and courage have always amazed those around her.

Bel was 4 when her little sister, Clar, was born. Both girls underwent extensive genetic testing and they were each diagnosed with Ruthmond Thompson Syndrome, an extremely rare genetic disorder. This causes both to be immune compromised, have bone abnormalities and have a predisposition to cancer. Along with having bilateral radial dysplasia, just like Bel, Clar also has bilateral tibial hemimelia and is a double amputee. Clar visits the prosthetic clinic, hand team and sees the limb team on a regular basis.

Bel faced many medical challenges in the short time God let us have her. At the age of 5, Bel was diagnosed with Non-Hodgkin’s Lymphoma Diffused Large B-cell. After this, the cancer began to show its ugly face in several other places throughout her small body. With every challenge she remained a fighter and a warrior - full of life, love, courage, hope and spirit. The strength she used to beat bacterial meningitis when she was only 1 year old, to defeat cancer when she was 5 and against all the other medical battles she faced, was phenomenal.

Her strength was as contagious as her smile, laughter and joyful dancing. Bel was always quick to include everyone and make sure others were cared for. She always wanted to share her never-ending love and happiness. Our little super girl showed everyone each and every day how to live life to the fullest, fight hard, to never ever give up and always trust in the good Lord who loves us all. Bel loved to sing, dance, play in the rain and be around animals. She especially loved being a big sister and child of God!

On the evening of February 17, 2018, Bel very unexpectedly earned her angel wings due to pulmonary hemorrhaging and was taken home to be with our loving Lord. We know that she met Him at the pearly gates with her health restored - already dancing, wearing a pink sparkly tutu and cape and singing at the top of her lungs. For those of us left here on Earth, she was taken too soon, but throughout her life, danced her way into the hearts of many and touched so many lives in transformative ways. God has always had big plans for this itty-bitty girl who had a great big spirit.

Bellanne Butterfly Blessings was started by our family as a tangible way that we can honor our sweet girl, while spreading kindness to others. We provide care packages for newly diagnosed childhood cancer families, surprise packages for kiddos who are enduring lengthy hospital stays, as well as small packages of hope to families who have medically lost a child. Bel never asked for birthday gifts for herself. Rather, she always wanted art and craft supplies that she could donate to the Child Life department. This November, Clar, my husband and I honored Bel by making a donation to the Child Life department at Scottish Rite. 

Bel is a superhero that taught all of us about living life to the fullest every day with her never-ending faith, strength, hope, courage and love!



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