Mother of a baby girl, who was born with a rare genetic condition which is causing her to tear her own hair out, says she is shaving her daughter’s head to raise money for another child’s cancer treatment. The girl’s mother noticed that she was pulling strands of hair from her scalp, which later came out in clumps. Unfortunately, the child then began chewing it and it became entangled in the feeding button she has in her tummy. The 2-year-old girl is non-verbal and her parents do not know if she will ever talk. Few months ago, the doctors told the parents that their daughter also needs two hearing aids because her inner ear has not fully developed.
According to the 36-year-old mother, Stacie Miller, her 2-year-old daughter Sydney has Primrose Syndrome and multiple other health conditions. Unfortunately, the little girl needs professionals to help her manage her health, per reports.
According to the mother, the first symptom that something was wrong was that Sydney could not open one of her eyes, prompting fears she may have been born without an eyeball. The doctors told the mother that her baby was suffering from a Horner syndrome, where one eye is blue and one is brown, and an indicator of an underlying condition. The child was also diagnosed with Primrose syndrome, which is so rare that even health care professionals have to Google it.
The 2-year-old girl is non-verbal and her parents do not know if she will ever talk. Few months ago, the doctors told the parents that their daughter also needs two hearing aids because her inner ear has not fully developed. According to Newsweek, the mother said that the Primrose Syndrome is very rare and the main characteristic is muscle wastage and scoliosis and autism.
Sydney’s parents also believe that the baby’s hair was posing a danger to her. They reportedly noticed that she was pulling strands of hair from her scalp, which later came out in clumps. Unfortunately, the child then began chewing it and it became entangled in the feeding button she has in her tummy.
The mom also said that Sydney’s behavior recently changed as she got a fixation on biting, which caused her to gnaw through a dummy a day before she began to pull out and bite her own hair. According to the girl’s parents, Stacie and Stuart, the baby is fed through a peg feed into her stomach, because of her complex needs. The parents also said that this caused further complications, with her hair starting to get tangled in the tubes, raising the risk of infections, per reports.
The unfortunate parents said that they believe the best thing to do right now is to shave their daughter’s hair and launch a fundraiser to help other children. Sydney’s family decided to to donate money raised to a fundraiser to help another child, Flora, with her cancer treatment.
Stacie Miller told EL: “I reached out to Stephanie, Flora’s mum, and explained we are going to be shaving Sydney’s hair because she keeps pulling it out and it gets tangled in her feeding tubes. So we set a date to shave her head and a fundraising campaign to hopefully raise some money for Flora’s treatment.
We are in and out of the hospital and have a massive care team of doctors, nurses and consultants. One day I noticed a bald patch on her head and noticed she had been pulling strands of hair out. Strands turned to clumps and then she started eating the clumps of hair that she pulls out, so we had to make the decision to shave it off. The hair Sydney pulls out gets tangled in the peg feed on her stomach that can cause infections so we need to shave it all off.
She has a really high pain threshold so she doesn’t feel the pain when she rips her hair out but we need to shave it off quickly so it has been a quick fundraiser. It’s a personal thing to share shaving your daughters hair but we have always shared Sydney’s journey and people like to see how she is getting on. The more shares there are the more we funds we can raise – we just want to raise as much as we can for Flora.”
The 36-year-old mom wrote on the fundraising page:
“We are fundraising for Flora as our 27 month old little girl Sydney was born with a very rare genetic condition called Primrose Syndrome. She also has horners syndrome, harlequin syndrome, partial agenisis of the corpus collosum, pituitary cyst, bilateral hearing impairment, global development delay.
With Primrose syndrome, it’s very uncertain what we are going to be faced with as Sydney grows up. We have come to the hardest decision ever in her journey to shave what’s left of her long, thick, brown, curly hair off. This is in the best interest for her and it will grow back. By doing this we are helping our girl but also helping someone else’s girl at the same time and so decided to put together a fundraising page for flora and hopefully bring in that much needed funding that’s still required for her journey.”