Girl with a rare genetic condition that causes her to tear her hair out

The mother of a baby girl born with a rare genetic condition that causes her to tear her own hair out says she is shaving her daughter’s head to raise funds for another child’s cancer treatment.

The girl’s mother noticed her daughter pulling strands of hair from her scalp, which eventually fell out in clumps.

Unfortunately, the child chewed it and it became entangled in the feeding button in her stomach. The 2-year-old girl is nonverbal, and her parents are unsure if she will ever speak.

Doctors informed the parents a few months ago that their daughter also requires two hearing aids because her inner ear has not fully developed.

Stacie Miller, 36, says her 2-year-old daughter Sydney has Primrose Syndrome as well as several other health issues. According to reports, the little girl needs the support of professionals to manage her health.

According to the mother, the first sign that something was wrong, was Sydney’s inability to open one of her eyes, raising concerns that she was born without an eyeball.

The doctors informed the mother that her baby had Horner syndrome, which is characterized by one blue and one brown eye and is an indication of an underlying condition. The child was also diagnosed with Primrose syndrome, which is so unusual that even doctors have to Google it, as mirror reported.

The 2-year-old girl is nonverbal, and her parents are unsure if she will ever talk. Doctors informed the parents a few months ago that their daughter also requires two hearing aids because her inner ear has not fully developed.

According to Newsweek, the mother stated that the Primrose Syndrome is extremely rare, with the main symptoms being muscle wastage, scoliosis, and autism.

Sydney’s parents are also concerned that the baby’s hair could endanger her. They noticed her pulling strands of hair from her scalp, which later fell out in clumps. Unfortunately, the child chewed it and it became entangled in the feeding button in her tummy.

Sydney’s behavior recently changed, according to her mother, as she developed a fixation on biting, causing her to gnaw through a dummy a day before she began to pull out and bite her own hair.

Because of her complex needs, the baby is fed through a peg feed into her stomach, according to the girl’s parents, Stacie and Stuart. According to reports, the parents also stated that this caused complicating factors, with her hair becoming tangled in the tubes, increasing the risk of infection.

The unfortunate parents believe that shaving their daughter’s hair and starting a fundraiser to help other children is the best thing they can do right now. Sydney’s family decided to donate the funds 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 daughter’s 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 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 agenesis of the corpus collosum, pituitary cyst, bilateral hearing impairment, and 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 their best interest of 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.”