Entries by PHRF

RareiTees for a Cure

  RareiTees for a Cure is a clothing brand with a unique mission to bring awareness to rare diseases, specifically Pitt Hopkins Syndrome. Our inspiration is derived from the founder’s daughter, Alexandra, one of 750+ in the world living with Pitt Hopkins Syndrome. Your purchase helps fund a cure for this rare disease and brings hope […]

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Matthew’s Story

When I was pregnant with Matthew I was put in the hospital at 32 weeks because I was dilated to about a 4. My gyn doctor was worried that I’d have the baby at home if I wasn’t hospitalized. So after being in the hospital for a total of 4 weeks, my high risk doctor […]

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Rylie’s Story

Meet our precious gift, Rylie! We are Jack and Heather of Pennsylvania – two very proud parents of a growing girl who was diagnosed with Pitt Hopkins Syndrome when she was just 6 months old. Rylie was born on April 3, 2009 and was immediately moved into the Neonatal Intensive Care Unit (NICU) for ten […]

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Henry’s Story

Henry was born in 2007 after an uneventful pregnancy. Although he was jaundiced and had issues latching on, it was only when he was 8 months old and not sitting up that we became concerned. We were referred to Early Childhood Services and since that time, Henry has been receiving physical therapy, occupational therapy, special […]

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Lilly’s Story

Meet Lilly! I am Etta and I am from Indiana. My daughter Lilly was born November 12th, 2008 at a very healthy 8lbs 9oz., I thought she was completely normal with great apgar scores and she caught on feeding very quickly. I noticed little things as she got older that didn’t seem normal to me, […]

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Vera’s Story

I am Cecilia, mother of Vera, 21 years old. Vera has an older brother, who is now studying neuroscience. We live in south of Sweden. Vera has been living in her own apartment with her assistants for one year. My body could not cope with any more sleepless nights and happily everything turned out so […]

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Carson’s Story

Sweet Carson was born in June of 2010 and was our first child. Leading up to her diagnosis at 6 months, Carson was continually missing her developmental milestones and further fell off the charts with her small head circumference. Worried about our newborn, we scheduled numerous doctor appointments to get an understanding of what was […]

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Phoebe’s Story

Phoebe was born on 15th October 2000, after a happy, healthy pregnancy. She is our 2nd daughter and her older sister, Chloe, is 3 years older. Life went on, life was hectic but fun with 2 lovely girls and a busy admin job. When Phoebe was around 6 months old her nursery teacher questioned her […]

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Eli’s Story

We are a family of four. My husband Scott and I have been married for 16 years; we have a 14 year old son, Blake and 9 year old son, Eli (PTHS). We live in Baldwin City, KS. On June 27th, 2003, Elijah James was born. When Eli was 6 months old he wasn’t sitting […]

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