Tatum's Tales: Brickelle
Welcome to Tatum’s Tales
Tatum’s Tales is a special place where we share the beautiful stories of children living with rare genetic diseases, syndromes, and other extraordinary challenges.
Parents submit their child’s story, and in return, I have the joy of photographing their little one during a complimentary mini session. These stories are more than just words — they’re powerful reminders of strength, love, and resilience.
I’d love for you to take a moment to read their stories, leave kind and uplifting comments to show your support, and share them on your Facebook or Instagram so even more people can be touched by these amazing children and their families.
If you’re new here, I invite you to start at the beginning and read Parts 1, 2, and 3 of Tatum’s Tales: https://www.sarahthompsonprice.com/tatums-tales-1/
Meet Brickelle!
Brickelle’s mom and I share many mutual friends from college and were able to reconnect on Facebook. I’m so thankful she and her family trusted me to take their photos and share Brickelle’s story.
We had such a fun session at the Christmas Tree Farm — full of laughter and sweet memories. I’m thrilled to finally share their beautiful photos along with her inspiring story. They are truly one of the sweetest families I’ve ever met.
I hope you’ll take a moment to read Brickelle’s journey, keep her and her family in your prayers, and share her story with everyone you know.
Brickelle's Story
Brickelle is a bit smaller than other kids her age of 8, but other than that you would never know she has a rare disease by just looking at her. She is energetic, creative and loving. And she is a proud big sister of two little sisters, Isla, age 6 and Jovie, age 2.
Brickelle entered the world June 14, 2010 weighing a healthy 8 lbs 5 oz. She was our first child and we were so excited! When Brickelle was 6 months old her pediatrician expressed some concern for Brickelle’s growth but I really didn’t think much of it. I thought she was just petite. She reminded me of my niece at that age. However, we went ahead and tried to boost her calories with supplementation. At 9 months our pediatrician was still concerned about Brickelle’s low weight. The journey began.
Our pediatrician recommended some blood tests and we discovered Brickelle’s liver enzymes were elevated and there was a possibility of Celiac disease. We went ahead and tested for Cystic Fibrosis and that test was negative but a colon biopsy suggested Celiac disease. We immediately got Brickelle on a Gluten Free diet and things seemed to be going well. She started sleeping through the night and was slowly gaining weight. However, a year later her liver enzymes continued to be elevated. We were concerned about Glycogen Storage Disease and discovered Brickelle’s blood sugar was very low in the mornings. A night time snack and preventing her from fasting too long solved that problem and genetic testing actually ruled out Glycogen Storage Disease.
We continued tests to address the elevated liver enzymes and in the process discovered Brickelle’s pancreas was not functioning normally. We ruled out Cystic Fibrosis a second time and the Doctors wanted to test next for Shwachman Diamond Syndrome which is the second leading cause of pancreatic insufficiency. Genetic testing was done and in December 2013 Brickelle was diagnosed with Shwachman Diamond Syndrome at the age of 3 ½.
Shwachman Diamond Syndrome, also known as SDS, is a genetic condition where a gene mutation is provided from each parent. There is a wide range of symptoms and severity within patients. Many body parts can be affected by SDS among them are the bone marrow, blood, pancreas, skeleton, kidneys, liver, brain, teeth and immune system.
We have been very fortunate that Brickelle hasn’t yet had to be hospitalized for any infections, but she does have an annual bone marrow biopsy along with visits to the hematologist and gastroenterologist several times a year. Her white blood count seems to cycle up and down, which is normal in SDS patients but does predispose them to more frequent infections. Brickelle does get regular ear infections and fairly frequent nose bleeds. She takes pancreatic enzymes to help her digest fat and extra vitamins to help with vitamin deficiencies. An enlarged liver and elevated liver enzymes are frequently seen in young patients. Liver enzymes tend to normalize with age and we are hopeful they will with Brickelle.
The concern we have is that her health could change without warning. Further complications that can develop are leukemia, myelodysplastic syndrome (MDS) and aplastic anemia. Nearly 5 percent of children with SDS will develop leukemia, with the risk rising to 25 percent by adulthood. These complications are life threatening and require immediate care by specialists who are experienced in treating SDS patients. These issues would require bone marrow transplants and blood transfusions. This is why we encourage people to donate blood and join the bone marrow registry.
Brickelle had this year’s bone marrow biopsy in January and we were informed there were non-specific changes noted in the neutrophil. We aren’t too concerned at this point. All of her bloodwork and other tests came back normal so that is reassuring but Brickelle will need another bone marrow biopsy in 6 months rather than 12. We pray and ask others to pray that no changes will be found at her next biopsy and all will be normal. Random changes can occur and can go away. No matter Brickelle’s future, we know we serve an awesome and loving God and we trust in Him.
To learn more:
http://www.shwachman-diamond.org/
http://www.danafarberbostonchildrens.org/conditions/blood-disorders/shwachman-diamond-syndrome.aspx
