A two-year-old boy with a severe facial deformity faces uncertain prospects of walking or talking due to an undiagnosable condition that has puzzled doctors. Despite distinct symptoms, specialists are resorting to a process of elimination, as numerous tests have yielded no conclusive results, leaving Aidan Jackoviak Smith’s condition a medical mystery.
Parents Vikki and Karl Smith were unaware of any issues when their son Aidan was born eight weeks prematurely on Boxing Day 2010. However, after three weeks, they discovered a growth on his face, back, and leg, and he began having seizures.
Initially, doctors suspected Proteus Syndrome, but a biopsy six months ago yielded negative results. Now, they are considering CLOVES Syndrome, another genetic condition causing blood vessel, skin, and spinal abnormalities.
Aidan, born at 4lb 10oz, was immediately taken to Newcastle’s Royal Victoria Infirmary due to his premature birth. The couple was shocked to learn about his rare condition, as he faced challenges with the growth and started experiencing seizures three weeks after birth, resulting in brain damage.
Karl said the enormity of the his son’s situation hit him when doctors told him Aidan was brain damaged and may never learn to walk or talk
When asked about his brother Aidan, 13-year-old Daniel expressed that having Aidan as a brother is just like having any other sibling, emphasizing the bond despite Aidan’s appearance. For the parents, the reality of Aidan’s situation hit home when the term “brain damage” was mentioned, raising concerns about his ability to walk, talk, and recognize them. The enormity of the situation became apparent, and the parents were overwhelmed when doctors provided CPR lessons in preparation for potential emergencies with Aidan.
THE BOY WITH THE MYSTERY ILLESS: WHAT COULD AIDAN’S CONDITION BE?
Doctors are struggling to diagnose Aidan’s condition, considering CLOVES Syndrome after ruling out Proteus syndrome. CLOVES is a rare disorder with 130 known cases globally. There’s no specific test, and diagnosis relies on recognizing symptoms like skin and spinal abnormalities.
While there’s no cure, medical care can manage associated issues. Aidan’s mom, Vikki, initially had reservations but found strength in caring for him. Despite the uncertainties, the family remains positive, especially as Aidan recognizes them, bringing joy after school.
Aidan’s parents initially worried he wouldn’t recognize them due to potential brain damage, but he now lights up when he sees them, blowing kisses and laughing. Despite ongoing challenges, they remain hopeful for his ability to walk and talk. Aidan is set for facial surgery in August at Great Ormond Street Hospital.
His half-brother, Daniel, sees Aidan just like any other sibling. The family faces public ignorance, but they stay positive despite financial strains. Karl, Aidan’s full-time carer, left his job, and Vikki took a pay cut. They are in debt and face uncertainties about Vikki’s job and housing suitability for Aidan. Without a definitive diagnosis, accessing support is challenging. Vikki remains determined to provide the best life for Aidan amid the uncertainties.