Jacqueline Kirby NKH Funding Project
Our financial statistics and goals we met for 2020
Our financial statistics and goals we met for 2020
Gross $19,967
Paid out to Charities / NKH research:
Boler Parseghian center for NKH specific research funding $10,000
Nora Jane Foundation for NKH match for research funding $1035
NKH Families in crisis $1329
Autism speaks foundation $58
total -$12,422 bal (7545)
Professional fees $410 (7135)
Maintenance, utility fees $953 (6182)
Postage, shipping $64 (6118)
Business related travel, establish charity expenses $1955
year end balance ($4163)
Funding project Balance beginning 2021: $4163 > = Bank savings $2263 / $450 stock / $1450 in sales merchandise inventory
Our Mission
Our Mission
It is our mission to gain funding through events, donations and other fund raising means, in order to provide researchers in the study and treatment of Non-Ketotic Hyperglycinemia the additional funds they need. It is our secondary goal to assist NKH families in crisis or assistance and to educate and bring awareness about NKH.
This website is dedicated to fund raising for research and support for families with children with Non-ketotic Hyperglycinemia.
This website is dedicated to fund raising for research and support for families with children with Non-ketotic Hyperglycinemia.
Our mission is to raise funds to continuously finance research for a cure for NKH, non-ketotic hyperglycinemia. This project was set up in hopes of of finding a cure for our daughter, “Jacqueline Kirby”, whom was born with Non-ketotic hyperglycinemia. In light of Covid and it's affects on society as a whole, funding has dwindled. So we actively have fund raisers now by offering products for sale to help raise funding.
Our greatest donations usually come from individual donors or foundations. We are forever grateful for them.
We have traveled to the University of Notre Dame to donate for this research and gain information about research and clinical trials. We stay as active as possible on the NKH leadership board and participate with all other organizations that promote the goal of finding a cure for NKH. In the year 2020 alone, we will be have donated over $10,000 towards research at The Boler-Parseghian center for rare diseases at Notre Dame and to the University of Colorado. These Universities continue doing research on this rare genetic disorder along with a handful more but can only continue to do so if their funding is supported.. We have and will continue donating a large percentage of everything we raise to the research funding program that is already in place. We hope that we can make a difference.
Thank you all for your continued prayers and kindness.#prayersforjackiekirby
It is a long road ahead but together we all can find an answer especially with our continued prayers and communion to do so.
You may mail your tax deductible donations to:
Jacqueline Kirby NKH Funding Project
16638 E Summit Ave Elkton, VA 22827
any questions call the Eddie or Joni
(540)435-7502
(540)208-8571
Please
Donate directly through the link provided at the top of this page.
Please follow Jackie's story on Facebook and Instagram.
#PrayersForJackieKirby
#NKHcrusaders
#NKHawareness
Our Story
Our Story
We’ve loved Jackie every minute of our journey and we will never give up on our mission!
We’ve loved Jackie every minute of our journey and we will never give up on our mission!
This is our story
This is our story
On Jan 10, 2020 at RMH in Harrisonburg VA, our little girl Jacqueline Emily Kirby was born. We were thrilled to have our new baby girl. The delivery was complicated so we decided a C section would be best because baby girl wasn’t responding well to the pitocin. The C section was complicated too because Jackie was a big girl and mommy, Joni, had to be cut horizontally and vertically. This made it hard on mom from the beginning. Jackie seemed fine to us but sleepy. On the third day of her life the doctors came to us and said something is wrong with her and she is the floppiest baby we’ve ever seen. They said that they didn’t have the knowledge or technology to help her and recommended she go to UVA in Charlottesville Va. We were devastated and caught so off guard. How could this be??? A special ambulance unit for infants was requested for her.
We followed them over and she was admitted. At first UVA was lost as to her condition. We stayed with her everyday. On the fifth day at midnight I was there with Jackie and she stopped breathing. I alerted the nurses and a team came and intubated her and the ventilator started breathing for her. We were crushed once again. At this point a doctor came in and said we believe she has non-ketotic hyperglycinemia which is a genetic disorder with no cure.
She would have seizures until she would one day pass away.
Again our hearts were torn from our chests. A suggestion was that we just pull the ventilator and let her pass away peacefully. We cried non stop but talked about if she were to pass away we should donate her organs to help another child so another family wouldn’t have to suffer like we were. A friend sent me a private message stating that there was a doctor in Colorado that specializes in this disorder. I contacted him immediately and asked his opinion. He asked for an MRI of her brain and it was sent. He was thinking she would not develop either and recommended letting her pass peacefully but then gave us and the doctors advice on how to keep her alive.. Joni and I decided we couldn’t just let her go and that we would leave it in God’s hands. Jackie was started on medications that might help. I read to Jackie every day. Curious George, Zombielina and Snowy bear were just three of the books. I noticed when I read to her she would start breathing above the ventilator, so I continued to read to her night and day. Every time I’d read she’d breathe above the ventilator. After about a week Jackie started breathing above the ventilator on her own. Then while I was reading Zombielina, she opened her eyes for the first time and looked at me. I was amazed and so happy. She had never opened her eyes before. The doctors recommended taking her off the ventilator in a couple days because she was doing so well but ended up doing it the next day. She was still on a feeding tube through her mouth for her feed and medications but doctors decided they wanted to move it to her nose to see if she would try to eat on her own. The next day she was squirming around and ate a 1/4 of her feed on her own. She would look every time you spoke to her and seemed aware of what was going on around her. She began to eat solely on her own after being fed partially through the machine after a few days. Then the doctors removed her feeding tube completely. We stayed at the hospital feeding her throughout the day and night on a three hour schedule. Joni and I took turns on the night feeds. We were trained on how to give her medications in her bottles. The day before Jackie was one month old, we brought her home. She continued on a three hour schedule with Mom and I taking turns with her care and administering her medications.
She is a beautiful, bright eyed baby girl that has beat the odds so far. We have prayed for her all along and thank God daily for this little miracle.I continue to ask for prayers for her and her undetermined future. She has us and a community that loves her very much. We continue to work with her daily with water exercises and other muscle improvement techniques. Jackie is now nearing 11 months old. She continues to beat the odds. She remains on a regimen of meds daily and continues to have severe seizures which we continue to try to get under control. Please continue to pray for her and donate. you can also buy our Merchandise so that soon gene therapy will be available to cure her and other children with NKH.