For many people, the sound of rain is a source of relaxation. Some use the sound as a background for meditation, while others grab their gum boots and run outside to jump in the puddles. In very rare cases, rain causes severe anxiety. One little boy was diagnosed with a rare condition in which rain could potentially kill him. Recently, he celebrated his first day of school – a big milestone for the family.
Noah Connell, who recently started his first day of school, was born under unusual circumstances in Glasgow, Scotland. His parents, Jade Gordon and Kieran Connell were only teenagers at the time of his birth. Jade was 18 years old, and Kieran was 16. Most parents had the opportunity to prepare for a baby, but Jade and Kieran had no idea they were expecting a child. Pictures from her 18th birthday showed little evidence that she was pregnant, even though she was in her second trimester.
The “Noah Syndrome”
The unexpected birth of their baby came with further complications. The doctors involved in Noah’s case were shocked by the rare medical conditions he was born with. They were so rare, that they nicknamed his accumulative conditions the “Noah syndrome“. Little Noah has had 11 operations in his life so far. He had a long journey of hospital visits before his first day of school. Not only was he born with a portion of his spine missing, but he also had severe facial deformations in the form of an underdeveloped jaw, cleft palate, a small neck, and a floppy airway. He became the first baby to have metal scaffolding surgically inserted into his face.
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Noah also has a condition known as hemifacial microsomia. This meant that one-half of his face was underdeveloped. This means that Noah might die if anything goes inside his mouth. Even just the smallest amount of water, like rain. Furthermore, his diagnosis with Pierre Robin Sequence meant that his facial deformations prevented his ability to swallow. This goes to show why his parents were so excited to celebrate his first day of school
Jade and Kieran have become accustomed to making many trips to the hospital with Noah. What seems to be their average family life is overwhelming for other families to try to comprehend. “It might seem like a lot to people but this is our normal. Noah sees so many different specialists and is at the hospital all the time but we’re just used to it.” She added, “I wouldn’t change a single thing.”
First day of school for little Noah
After Noah’s birth, his surprised teenage parents had to wait a week before they could hold their son. The doctors allegedly told Jade and Kieran that he might not survive for long, so they should make the most of the time they have. Fast forward to the present day, and Noah has defied the odds.
Despite the many conditions he was diagnosed with, Noah had his first day of school on the 17th of August. Jade spoke about the emotional roller coaster they have been on as parents raising a child who has so many life-threatening deformations. “The last five years have gone by in what feels like six months,” said Jade. “It’s been dead, dead emotional, especially seeing him in his uniform. I have been crying and there will be tears when we wave him off because he has defied everybody’s expectations – even ourselves.”
She went on to say how proud she is of her son. “He keeps learning to do more and more and proving everybody wrong. We are just so proud, overwhelmed with pride.” Not only was Noah excited for his first day of school, but his best friend from nursery school was going to be there as well. Noah’s mother described them as “double trouble” when they are together.
Keep Reading: Woman with rare medical condition gives birth to 44 kids by age 40
- “Joyous First Day Of School For Little Boy Suffering Rare Conditions.” Vida Newspaper. Simona Kitanovska. August 19, 2022.
- “‘He is our inspiration’: First day of school for Glasgow boy with rare health difficulties.” Glasgow Times. Catriona Stewert. 17th August 2022