Please place all orders by Friday, June 5th. All orders will be shipped directly to you.
Hudson was born august 29th, 2017. For the first year and a half of his life, no nurse or doctor could tell us what was going on with our little boy. He had some heart and breathing issues in the NICU. His heart rate would drop so low that it would cause him to stop breathing. This was also caused by Extremely Low muscle tone. We did test after test, with no answers coming back. Hudson got put into therapies weekly. Physical, occupational, feeding, and speech therapy; all twice a week. Plus the chiropractor weekly. That’s 9 appointments for a one year old (& still going as he’s 2.5 years old now).
Plus we do all the other “random” appointments. As in, GI, Pediatric, neurology, genetics, eyes, AEA, clinical developmental delay, psychologist, and more specialist that will keep coming as he gets older.
PURA Syndrome is an EXTREMELY Rare genetic disorder. When his DNA strand was being made, one specific strand stopped making the protein he needs.
PURA syndrome is a neurodevelopmental disorder characterized by mild to moderate developmental delay, moderate to severe intellectual disability, seizures and seizure-like movements, low muscle tone (hypotonia), feeding difficulties, and breathing problems. Additional signs and symptoms may include autism; excessive drowsiness; difficulty controlling body temperature; heart, gastrointestinal, eye and hormonal problems; skeletal problems such as an abnormal curvature of the spine (scoliosis) or a small hip socket that doesn't fully cover the upper thighbone, known as hip dysplasia; and short stature.
PURA syndrome occurs when one of a person's two copies of the PURA gene, located on Chromosome 5, does not function normally.
This can be caused by a spelling mistake (variant or mutation) in the gene or by loss of one copy of the gene (deletion).
Because the features of PURA syndrome are common, a genetic test (such as whole genome sequence is needed for a diagnosis.
Treatment typically includes speech and language support as well as physical and occupational therapy and surgery to correct any birth defects or bone problems. Early intervention is important.
We would like to sell these t-shirts to represent Hudson and PURA Syndrome. They’re known to be LESS Than 400 people World Wide with this syndrome, I would like to spread the word about PURA Syndrome. 10% of the proceeds from the shirts will be donated to the PURA Syndrome Foundation in hopes to help find more answers about this rare disorder, the other half of the proceeds will go towards Hudson’s medical needs and equipment that he needs to keep thriving and working hard daily to become the best that he can!