Support pours in for a child with a life-threatening condition discovered online by her mom

Years after it emerged as a popular platform for sharing music and dance videos, TikTok has become a global platform for raising awareness about everything from mental health to finances and rare conditions. It has also opened up an avenue for people to share their struggles and gather support both emotional as well as financial from the online community. It played both roles in a mother's life, by first helping her find out that her daughter was suffering from a life-threatening condition, before allowing her to raise funds online. For as long as she could remember, Morgan Rachal thought her infant daughter, Lydia (@hopeforlydia) was perfect, healthy, and doing well. She didn't think Lydia's health was an issue for her or her partner until Morgan's mother forwarded a TikTok video to her that showed a young child similar to Lydia.

After further research, Morgan Rachal, 29, noticed a similarity between the eyebrows of the child on social media and Lydia. Initially, they thought she got them from her dad but she later understood that that was the first sign of Sanfilippo syndrome. "Lydia was the perfect baby; she reached all her milestones and her symptoms are common things that babies have in general," mom told Newsweek. "I started doing my own research and then I saw the symptoms were frequent ear infections, GI [gastrointestinal] issues, and sleep disturbances, and it just hit me," she added.

Despite this, Rachal's mother and Lydia's grandma chose to look into the matter further and found Hayden and Olivia, two other kids, on social media who had been identified as having Sanfilippo syndrome. Suspecting that Lydia might have the condition, Morgan presented the evidence to her pediatrician, which led to more in-depth tests. Morgan shared that her daughter’s pediatrician couldn’t provide an official diagnosis because he wasn’t familiar with the condition, and instead recommended Morgan to order a testing kit. A week later, the results came back positive and confirmed that Lydia had Sanfilippo syndrome.

Mucopolysaccharidosis type III (MPS III) better known as Sanfilippo syndrome, is a hereditary condition that causes significant neurological damage due to the body's inability to break down specific sugars. At birth, these children typically appear healthy, but as time passes, their lifespan is markedly reduced and they gradually lose cognitive abilities, as per the oulet. "There are four subtypes of Sanfilippo syndrome (MPS III A through D), but MPS IIIA is the most common type with an incidence of about 1 per 100,000 births," Dr. Alexis Monique Javier from Children's Memorial Hermann Pediatrics in Houston shared with the news outlet.

"If Lydia could get into a clinical trial before the brain damage begins, it either could cure it or prolong the progression of the disease," she explained as there is no treatment or cure available for it yet except for clinical trials. Refusing to give up, Morgan decided to use her TikTok as a platform to raise awareness and funds for Lydia.

Viewers poured in their wishes and prayers for the family and the girl. "I used to care for 2 siblings that had Sanfilippo syndrome and they were the oldest in the world to live with the disease. Prayers for your beautiful girl," said @rebecoochie18. "I don’t know much or anything about Sanfilippo syndrome but I do know she is absolutely gorgeous!" commented @eltorro08270114. "Our school has a beautiful student with Sanfilippo and our students have loved her immensely this year! Be brave, mama! Your baby is so loved and the Lord has His hand on her!" added @mama.c344.

"Lydia is our little sunshine, she just brings so much happiness to us and you look at her and see all the potential that she could have in life," Morgan said. "We know there are treatments out there, we just have to get them." However, the cost of these trials is substantial and Morgan aims to raise $1 million for Lydia. "Share, repost, donate if you can and most of all, prayers," she appealed to supporters before adding, "The donations go to the foundation that does the research and funds for clinical trials. She needs a clinical trial — it's her only shot at life."

You can follow Morgan Rachal (@hopeforlydia) on TikTok to help, support, and keep yourself updated on Lydia's journey.