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Emily's Story

Posted by Michelle Finn on

Emily's Story

Emily's Story written by her Mom, Denise. It seems like just yesterday that Emily was born, yet her 18th birthday is in 2 months. She was a tiny baby that needed extra support after birth, that I was not able to hold except during feedings while in the hospital...I really tried to drag out those feedings for as long as possible before having to return her to the isolette. She came home after 11 days, on my birthday, the best gift I could have received. We had a lot of health concerns over those first 2 years where we collected...

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Zola's Story (1p36dsa)

Posted by Michelle Finn on

Zola's Story (1p36dsa)

  Written by Zola's Mom Chelsea June 2016 changed our lives forever. Rushing to Penn Highlands Dubois while on the phone with the NICU doctor, Dr. Mohamed Hassan, as he’s telling me he will probably send her to Pittsburgh University Children’s Hospital (CHP). The reason; he wasn’t waiting any longer for her genetic testing. I had a high risk pregnancy, almost losing us both twice due to Hyperemesis Gravidarum and ended up with a PICC line just to stay alive. The PICC line was inserted at week 22 when I was close to sepsis and was taken out ten weeks...

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Annette's Story

Posted by Michelle Finn on

Annette's Story

                                                        Written by Annette's mom, Heather. Annette Lynn Nichols was born April 11,2002. Annette was a week old when she had her first visit to the ER; she was having breathing problems. She was only three months old when we was rushed to Cooks Children's Hospital because she was having seizures. She was admitted for a week. After that  she was diagnosed with heart problems and yet another big hospital stay. Then came acid reflex and many more issues. She sat up for the first time at 3 yrs old (on the changing table).  She was unable to walk independently. She loved...

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Grant's Story

Posted by Michelle Finn on

Grant's Story

                                  Written by Grant's Mom Dianna Hi, this is Grant.  Grant is 14 years old. He is my special 1p36 son. Born with 1p36 deletion, but did not get a concrete diagnosis until 3 years of age. He is non-verbal, non-ambulatory and has a number of other health problems that follow. He has the sweetest disposition, an infectious laugh and is very sweet. Of course this is not the life we imagined for him, as no parent would. However, he has taught me how to be patient, understanding, and to be the best advocate a mom could possibly be....

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Melissa's Story

Posted by Michelle Finn on

Melissa's Story

Melissa's Story written by her Mom Sara. Melissa turns 20 next month. How is that possible?! She's been through too much in her two decades, but still smiling and enjoying life. She started out with an ambulance ride to the nearest children's hospital with respiratory and other issues. While being whisked along the highway, Melissa gave the first indication of her stubbornness...uh, determination!...she very deliberately extubated the breathing tube from her throat! A month in the NICU, with tests and procedures, the doctors diagnosed her, along with four others in the NICU, with Pierre-Robin Syndrome. They assured us that she'd...

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