Gerard and Kaitlin Norton were given sad news that no parent wanted to hear. Their baby was diagnosed with a rare neurological disorder, PKAN. The parents of a six-month-old, Madeline, discovered she was not like any other newborn; she was more stiff.
They went to see a pediatrician to get her checked. Earlier, they were in marital and newborn bliss. The new parents were happy to have reached the milestone in their lives. After the pediatrician visited, they went to a neurologist for a further check-up.
Although the pediatrician said there was nothing to worry about, the neurologist made them get a genetic test done. Kaitlin explains that it felt like a normal checkup, and they did not feel anything was different. However, on June 12, their dreamy life was shattered with the news of her diagnosis.
She got a very rare disorder since both parents were carriers of the disease. The doctors gave their daughters ten years to live. The parents found out that Madeline’s brain will start to accumulate iron, and this will impact her motor functions, as reported by People.
From the ability to speak and swallow to walking around, her body will degenerate. Sadly, there is no cure for the condition, and they are hopeless. It took them several days to process the news, and then they discovered the Loving Loic Foundation.
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It is raising $5 million for therapy gene trials, which may be a hope for a PKAN cure. Another thing they did was set up a GoFundMe to support the foundation. So far, their coworkers and friends have helped spread the word.
Kaitlin also posted on TikTok to get the help needed. She shared details about the diagnoses and the things they’ll require in the future to ensure she’s comfortable. They also have an Instagram handle, Madeline’s Mission, that spreads awareness and Madeline’s updates.
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The parents appreciate the support they have received so far; it has restored their faith in humanity. They are hoping to find a cure soon and feel like they can beat this once they raise the five million dollars.
Kaitlin explains that no one wants their kid to go through this. She appreciated the community’s help they are receiving for their daughter. They have a long battle ahead; however, they know what they are up against. At first, they might not have known what to do, but now they are pretty positive.
