Zola's Hope for 1p36DS is fully dedicated to supporting NICU patients, their parents, NICU survivors and genetically disabled individuals.

-All the while spreading awareness of 1p36DS.

At 35 weeks 5 days gestation, Zola's heart kept falling off the charts-requiring an emergency cesarean. Following her abrupt arrival, Zola was admitted to Penn Highlands Dubois NICU for 12 days. During Zola's stay, we shared our very first holiday together- Mother's Day. This is where it begins for Zola's Hope. 

As a first time mother, seeing my peanut of a baby under the blue lights and all those tubes wrapping her up in an figurative web, it's absolutely striking-to see the creation you made AND the fearful unknown for your child all in one. 

One day, Zola recieved a few gifts from the local kindergarteners, a donated stuffy, a brand new outfit. Mother's day, a sweet yet extremely simple act of kindness from the NICU staff, in the form of a tiny planter was all it took for me to feel loved and seen. Her tiny footprints, maybe the length of my pinky finger, shaped into a butterfly. 

Fast forward to 6 months old and a follow-up NICU visit, Dr. Mohamed Hassan refers us to genetics for suspected Cornelius DeLange Syndrome. Now, I'm not truly being hit by the reality just quite yet. She's preemie, is all her family doctor would tell us-no big deal. So conflict begins.

Now, fast forward 7 months later and we are in a dire emergency. Zola's having a bowel prolapse but this time is different. Hassan, the NICU doctor instructs us to get to the ER and he has arranged for us to be sent the a local children's hospital For FTT, low weight gain, etc. He urges me to not leave until she has genetic tests pulled. A week later, I may have had security threatening to rip us out but I held my ground until a new nurse walking by our room heard my argument. Within 1 hour, tests were sent out. 

One month later, we are at a neurology appointment for her microcephaly, when Aunt Effie and I get the unofficial diagnosis of her genetic testing. 

Two weeks later, we see genetics. We are told her genetic makeup, given a printed slide and sent home.

That is it.

1p36 Deletion Syndrome is a rare genetic disorder. Chromosome 20Q13 Duplication is even more rare. And no one knows much about the one, and nothing on the other.

1p36 deletion syndrome is a congenital genetic disorder characterized by moderate to severe intellectual disability, delayed growth, hypotonia, seizures, limited speech ability, malformations, hearing and vision impairment, and distinct facial features. The symptoms may vary, depending on the exact location of the chromosomal deletion.-Wikipedia 

Chromosome 20Q13 Duplication, we truly don't know much of anything about.

We focus on 1p36 Deletion Syndrome not just due to Zola being affected by it but because-along with other genetic disorders-1p36 is more common than you know. 

It's just rarely diagnosed. 

Yep.

It can affect entire families, generations down the line. Yet, you could never know until just one day, you find out. Zola's Hope is affected outside of just her. We support and advocate for our loved ones as well. We want families just like ours to know they are all important, too. This goes for many genetic disorders, not being  diagnosed.

Autism, epilepsy and cerebral palsy are usually covering up and replacing the need for actually DOING genetic testing in healthcare's eyes. Some forms of genetic disorders aren't even that easy to see, either.

Zola's Hope hasn't forgotten those who advocate and support not just her, but those children and adults with special abilities and their parents/caregivers.

 Without Dr. Hassan, we would have most certainly suffered longer. Just a small town doctor, doing BIG things for tiny babies. 

8 years ago, we held our first Zola's Hope fundraiser for Christmas. We collected items to fill 16 stockings, one for each NICU bed. Decorated by Zola's close cousins and friends, stockings were completely filled and hand delivered.

We believe giving back is our best way to show our love and appreciation for once being in a time of darkness. 

Zola's Hope will be actively taking donations for NICU babies, their parents and the staff. 

Our next donation drive begins today, specifically for our Christmas visit to Penn Highlands Dubois NICU. 

Monetary donations are truly appreciated to achieve purchasing items for this specific Christmas drive. 

Physical donations can be mailed or a member of Zola's Hope will meet for your donations. 

Email to inquire mailing details.

Our goal this year is to overflow the NICU with love, show support to parents during the holiday and to ensure those angels we call nurses are also seen. 🧑‍🎄🎄