Huntlee Baggett

Age: 5 years
Cognitive Age: Less than 3
Therapies: Occupational and Speech 
Schooling: Special Needs Pre-School
Siblings: Chasity (14) and Oakleigh (2)
Parents: Josye and Ephram Baggett

Kabuki Symptoms: Global developmental delay, hypotonia, chronic constipation, difficulty sleeping, hyperactive with an inability to focus, vision problems, eye muscle issues (4th nerve palsy), chronic ear infections (3 sets of tubes), chronic infections, happy demeanor, GERD, previous NG tube (failure to thrive)

    Non-Kabuki symptoms: multiple hemangiomas, microcephaly

Huntlee's Story: Huntlee's story begins very early in Josye's pregnancy. Huntlee had an identical twin, Hartlee Reese, who was diagnosed with Hypo-plastic Left Heart Syndrome in utero. When that happened, Josye and Ephram knew they had a tough road ahead of them. When Josye was 26 weeks pregnant, she was sent away from her family and friends in Alabama, all the way to Ohio because she was experiencing twin-to-twin transfusion (TTTS. According to Medlineplus.gov, TTTS is, "a disease of the placenta. This condition affects twins or other multiples that share a single placenta containing blood vessels going from one baby to the other. Blood from the smaller "donor" twin is transferred to the larger "recipient" twin through interconnecting vessels causing an unequal exchange of blood. The recipient twin is at risk for heart failure receiving too much blood from both the placenta and donor twin, forcing its heart to work harder, while the donor twin is at risk for loss of blood." Huntlee began to retain too much fluid, so Josye had to have amniotic fluid withdrawn due to concern that Huntlee would develop high blood pressure.

Josye's due date was January 16, 2015. She was in and out of the hospital until November 3, 2014, when she was admitted for Hartlee having fluid build up in her stomach. Then, one of the worst-case scenarios happened: Hartlee didn't make it. On November 4, 2014, Hartlee took her last breath before her parents could ever hold her. Josye had to continue carrying her so that Huntlee could have a chance at life. It didn't take long, though. On November 7th, Huntlee started to have heart rate decelerations and Josye was rushed to have an emergency C-Section. Both girls were delivered at the same time, at 30 weeks gestation. Huntlee weighed a miniscule 2 pounds, 14 ounces and went straight to the NICU where she spent 48 days. During that time, she had a feeding tube and heart monitor and had to learn to regulate her temperature. On Christmas day, 2014, Josye and Ephram got to take Huntlee home. She was still very small, weighing just 4 pounds, 8 ounces, but she was going home!

At home, Hutnlee continued to battle with feeding issues, GERD and was admitted to the hospital several times for failure to thrive. Her formula was changed multiple times as her body struggled to break it down and testing revealed she had a milk allergy. When she was 6 months old, an NG tube was placed to assist with feeding and to help her gain weight. By the time she turned 1, Huntlee weighed 10 pounds.

Because she continued to be delayed in reaching milestones, Huntlee had physical therapy and occupational therapy. She didn't crawl until she was over a year old, she didn't walk until she was over 18 months. Finally, her geneticist did an Alpha Hudson Study, which revealed she has the KMD6A Kabuki syndrome mutation.

Huntlee has followed with several specialties, including neurology, genetics, hematology/oncology, orthpetics, ENT, eye doctors and more. She has had over 30 ear infections, had sinus infections, UTI's, pneumonia, etc. Her tonsils and adenoids were removed for being enlarged. She has chronic constipation that has required hospital visits due to not being able to pass the stool. She takes medicine to help her sleep and to help her focus. She receives speech therapy at school to help strengthen her mouth to help with drooling, and will soon start occupational therapy to help with feeding. She is globally delayed, and at the age of 5 she cannot dress herself, feed herself, or brush her own teeth.

Despite her delays and her struggles, Huntlee is a happy kid who loves to do typical kid things, like run and dance. She may not be able to do all the things she wants to do, but she doesn't let that stop her from trying! She may be behind in her milestones, but she gets there when she's ready and her parents are there to support her every step of the way.

Huntlee’s Favorites: "Huntlee is an overall happy child she loves to run and never wants to be still shes very active. Shes played baseball. Shes obsessed with peppa pig and paw patrol. She hates to have her hair brushed and to wear shoes."

 

Huntlee's Relationship with her siblings: "She loves them and is always a happy child she loves to give hugs and high fives. She always greets Oakleigh with a hug when she gets home from school."

Advice for Kabuki families: "Remember to see the able not the label. A diagnosis is not who your child is. I've learned not to compare her to other children and remember they will get there on their own time, at their own pace. Keep up with medical records, have a binder on stand by. Let them be a kid, let them be happy and don't treat them any different from other kids. Kabuki kids are amazing and they are beautiful. Also remember to take care of yourself as a parent, too. If you're not okay and well, your family won't be either. They need you to be happy and healthy too!"

Advice for parents of “typical” children: "Parenting in general is hard but with a special needs child it's so much more time consuming. You have constant doctor appointments, and medication list. I constantly Lysol and sanitize my house to help where she want get sick. I have to still feed her and she is still diapers. She can't count and do her alphabet yet but we're working hard. Also another hard part is trying to protect her feelings from the people who want to be mean and talk about her. People can be very cruel and call special needs kids rude names and ask "whats wrong with them?" I wish I could shield her forever from people who say mean things. She has changed me for the better and made me so much happier she was a god send. She taught me what love is, unconditional love. Her smile and laughter will melt any heart."

How Huntlee has impacted the family: "Being a kabuki parent is difficult but each child has different needs so everyone's journey is different. I feel very blessed. Huntlee has taught me much as a parent, she loves so much, she has a pure heart and I admire her for that. If she doesn't feel good she doesn't let it get her down she still wants to play and cuddle. I love it. She is a fighter and i don't know what the future for her my hold but with her strength I no she won't give up with whatever we might face. I just want to make sure I'm always there to help her and see her achievements she might just have a different time frame then others but I know shes determined enough to get there."

Josye and Ephram have certainly been through a lot with Huntlee, never mind their typical and just as amazing other two daughters! Chasity and Oakleigh know what it means to sacrifice for their sister, and they love her so much. Little Oakleigh often acts like Huntlee's protector, never mind that she's a few years younger! The family is lucky enough to have a support system of family and friends whom they can rely on in times of need, but most of all, they have such a love for each other that there's nothing they can't conquer together.

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All Things Kabuki (ATK) is a registered 501(c)3 non-profit corporation based out of Wasilla, Alaska. We are the only U.S. patient advocacy group supporting the Kabuki community globally. Our mission is to raise awareness, incite research, and support individuals and families affected by Kabuki Syndrome. 

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