Jaiya is a 12th grader in North Carolina. She was diagnosed at the age of 2 with Chronic Severe Neutropenia-Autoimmune. Jaiya’s body responds poorly to Neupogen and as a result has not been able to remain on it as a form of treatment. Her Neutropenia has caused her and her family to spend countless nights in the emergency department resulting in extended stays at the hospital. She is blessed with an extremely supportive family and community who have given Jaiya a strong foundation to define Neutropenia on her own terms. As a Junior Ambassador since the program began, Jaiya has found her voice in raising awareness and being an advocate for the Neutropenia community through many different activities. Check out all the awesome things she continues to be involved with—pretty amazing!!!
Project JPAC Project JPAC “Packed with Fun, Just to Bring You Joy!”
January 3, 2023- January 3, 2024, January 3, 2024- currently in process
Project JPAC was created 8 years ago on behalf of then, 3-year-old Jaiya Evanni Clark after being diagnosed Chronic Severe Neutropenia-Autoimmune. Jaiya’s illness has caused her and her family to spend countless nights in the emergency department resulting in extended stays at the hospital. With efforts to comfort her and her older brother, Jeffrey II, during their long waits in the ER her parents, Jeffery and Anyua Clark, packed bags that were filled with arts and crafts. After many nights of the Clark children sharing their arts and crafts with other patients at the hospital, the children began insisting on bringing extra bags for the other children.
In 2010 Jaiya’s church, New Birth Community African Methodist Episcopal Church (NBC) and one of its ministries, The Jarena Lee Missionary Society, joined the effort and donated 300 JPACs to Moses Cone Hospital in hopes to bring joy to children in similar situations to Jaiya’s. Every year, NBC sponsors the project by collecting donations from church members and partnering with other community organizations by assembling the bags and delivering them to local medical facilities. In November 2018, a record number of 800 bags were delivered to!
The zip lock bags of hope were geared to entertain children receiving care in local hospitals containing fun activity items to keep children occupied during their visits to the hospitals. This includes crayons, coloring books, stickers, books, colored paper, colored pencils, pencils, markers, and wrist bands. Literature about Neutropenia and Jaiya’s story are also included in the packs. Jaiya and her network deliver the bags to hospitals, clinics, and labs.
Jaiya continues to lead the movement by collecting items, designing publications, and most heart wrenching, hand delivering the JPAC to hospital bedsides. Jaiya has spent over 50 hours or more each year collecting JPAC items from her schools and various extra- curricular activities. She has been interviewed and wrote short speeches to encourage her friends, classmates, teammates, and family members to give to JPAC.
Through serving others, she has been able to live a life of peace even with sickness in her body. Her hope is to have Project JPAC in all 50 states.
Books for Brenner’s: “Share a Tale to Share a Smile”
September 6, 2023-October 1, 2024 (scheduled drop off)
Jaiya is a patient at Brenner’s children hospital hematology clinic. In the hematology clinic, she is always blessed with “goodies” and “treats” that volunteers have donated. In addition to delivering Project JPAC each year she wanted to restock the clinic’s bookshelf. Jaiya partnered with a local high school to collect books for the Hematology clinic. She wrote a letter to the school’s service-learning ambassadors to solicit their help. She wanted to launch a project to share kindness in the lives of ill children at Brenner’s Hospital and encourage them to do something she thinks is therapeutic, read.
In December 2018, students at the high school and Jaiya’s family members were encouraged to donate new or gently used books to a project she titled “Share a Tale to Share a Smile”. She created flyers and sent text messages and emails to everyone. She designed inspirational bookmarks and labels for the inside of each book. She promoted the service project on her social media outlets and presented the project to friends and family members. This has been an annual project since 2018, even through the Pandemic.
In addition, she knows that many times children with chronic illnesses are not able to attend school regularly and fall behind their peers. The push for early literacy is not a focus of their parents and care givers, their health is most important. From personal experiences, she knows that upon returning to school the children may have anxieties about everything they have missed and may begin to develop low self- esteem, which may lead to depression. By providing books she would be implementing literacy opportunities while hospitalized and promoting self-worth during such a difficult time.
She also desired to go to the clinic to have story time and serve hot chocolate, sweet treats, and candy to the patients. However, the hospital had an age restriction for visitors due to a flu epidemic. So we now offer virtual reading time with the children.
Again, her focus was on lifting the spirits of those who are sick, all while encouraging reading. Her hope is that patients will find the books to be places of peace and comfort. That they will have the opportunity to escape their current state of mind and literally get lost in the stories they are reading.
In May 506 books were delivered to Brenner’s! The staff and patients were very excited and appreciative.
Community Partnership- Level Up Parenting
“ I have partnered with Level Up Parenting to serve single mothers. Level Up Parenting is a local nonprofit that serves single mothers in a lot of different ways. I got with the president and her board to find single mothers with children with chronic illnesses. My parents work hard to get me the care I need, and they do it together. So, I figured it is extra hard on single moms. I spent 6 weeks in June and July 2023 surveying the single mothers that already work with the nonprofit. I had a QR code that I used as asign-upsheet and questioner at most of the organization’sevents in June and July. I was able to work with 5 mothers that have children with chronic illness. My team created packages for the mothers that included mental health resources, thermometers, children’s Tylenol and ibuprofen as well as information from the health department. I partnered with Level Up Parenting to host an event on September 16th for the 5 moms I worked with and the other moms. It was a health fair where the children were able to come and get free dental services and 7thand 12thgrade immunizations required by our state. We fed the families and allowed the moms to receive free massages.”
In addition to these projects, Jay also does a Classroom Presentation each year to raise awareness and educate her classmates about Neutropenia as well as participates in World Rare Disease Day on February 28th by encouraging friends and family to wear denim, zebra ribbons and endorsing national campaigns.
Her passion to help others and raise awareness is truly inspiring. Congratulations Jaiya!! You continue to make a difference in your community!! Thank you for all you have done Jaiya, and we wish you the best Senior year!!
