The MLD Story Project: Bryleigh (Texas)

When Bryleigh was 14 months, she’d hit all her developmental milestones besides walking. One doctor thought the cause was neurological, but there was another big problem: Bryleigh had a heart issue. So, on her 2nd birthday, Bryleigh had open heart surgery. After a successful surgery, Bryleigh’s parents Kaprice and Corbin Shullanberger were relieved.

However, Bryleigh’s lengthy recovery caused the doctors to order an MRI that ultimately led to an MLD diagnosis. Bryleigh’s parents were terrified. The heart problem with her aorta was minor compared to this devastating neurological condition. Within just three months, Bryleigh lost the ability to walk, talk, and eat.

Doctors gave Bryleigh five years to live. But Bryleigh defied the odds and lived past the age of ten. Her loving family took diligent care of her and always rallied even when nursing coverage was denied for four years following Bryleigh’s diagnosis.

As Kaprice notes, Newborn Screening is so important because parents and children should never have to go through this. Wanting to help families like theirs, the Shullanbergers started the Believing For Bryleigh Foundation which gives grants to families in need and more.

 

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3-Hydroxy-3-Methylglutaric Aciduria
3-Methylcrotonyl-CoA Carboxylase Deficiency
Argininosuccinic Aciduria
Beta-Ketothiolase Deficiency
Biotinidase Deficiency
Carnitine Uptake Defect
Citrullinemia, Type I
Classic Galactosemia
Classic Phenylketonuria
Congenital Adrenal Hyperplasia
Critical Congenital Heart Disease
Cystic Fibrosis
Glutaric Acidemia, Type I
Hearing loss
Hemoglobinopathies
Holocarboxylase Synthetase Deficiency
Homocystinuria
Isovaleric Acidemia
Long-Chain L-3 Hydroxyacyl-CoA Dehydrogenase Deficiency
Maple Syrup Urine Disease
Medium-Chain Acyl-CoA Dehydrogenase Deficiency
Methylmalonic Acidemia (Cobalamin Disorders)
Methylmalonic Acidemia (Methymalonyl-CoA Mutase Deficiency)
Primary Congenital Hypothyroidism
Propionic Acidemia
S, Beta-Thalassemia
S, C Disease
Severe Combined Immunodeficiency
Sickle Cell Anemia
Trifunctional Protein Deficiency
Tyrosinemia, Type I
Very Long-Chain Acyl-CoA Dehydrogenase Deficiency
Adrenoleukodystrophy