STAT JAK Immune Association

05/16/2024

Today marks 3 years that we lost the most amazing person that you could ever meet. I’ll be raw and honest when I say, I don’t need dates as a reminder, I feel her loss every single second of every day. You wouldn’t understand nor would I want you to, how much she truly is on my mind and never leaves it. I have a constant reminder that she’s no longer here. But with that said I will use today as a day to honor her, the life that she lived, and all that she was to each and every one of us. I had a God given chance to do meaning centered grief therapy through a study with St. Jude. My therapist was through Sloan Kettering Hospital in New York. When I tell you that it was a divine intervention, and I couldn’t have hand picked a better person to share Jenna’s life, and story with, and help ride the waves of grief with me. She was truly sent to me by God, and when it ended several weeks ago, after 16 sessions, I truly balled at how God orchestrated the meaning centered grief therapy, and sent me the perfect person to help me through. And I couldnt be more honest when I say that every single person needs this exact therapy who has lost a child, it was put together by other parents with child loss, and it was laid out so perfectly. I can’t be more grateful to have had the opportunity to participate in the study, and be able to inimately share my daughter with someone that I will never forget, and not sure what I would have done without her, or where I would be today without her today. Through this therapy I had an opportunity to put together a Living Legacy Video that I worked incredibly hard on and waited til today to share it, it’s lengthy but worth the watch, and I pray it blesses you today.
To the people that remember Jenna with me……the messages Trenton sent me a few days ago that were just so incredibly beautiful and touched me more than he can imagine. My husband who gives me gifts from Jenna and never fails to include her, Tyler, My Mom, and Ed, Grandma, Dad, and Joann, sisters, My Tennessee Mom Laura, my bestfriend and 2nd Mom Janette, my work daughter Cassie, Aunt Bama, and so many other family, friends, and so many patients that have touched my life, and help me to keep her memory alive you know exactly who you are and you just don’t know what it means to me and how special you are in my life. I truly couldn’t repay you all for everything you’ve done for me. I pray today and each and every single day, in Jenna’s honor that you would be kind, love like Jesus, hug your loved ones, and let them know how much you love them. Tomorrow isn’t guaranteed and we don’t know how much time we have here, and I’m so forever grateful that Jenna’s faith was so strong, and I will see her again one day soon. Until then I will continue to honor her and Live Like Jenna.

04/09/2024

Meeting new people from all over the country and learning so much. Excited to be here with our new PAG (patient advocacy group).

02/26/2024

02/25/2024

Arron’s Story - Zanesville, Ohio

At 8 months old, Arron had symptoms of a stomach virus. She had dropped 7 lbs. in just a few days and was not improving. She was rushed to her local Children’s Hospital. She spent 2 weeks there while doctors ran tests and searched for answers. Doctors determined her intestines weren’t collecting the nutrient needed and her thyroid gland wasn’t working. They said that the virus had wiped out something in her intestines and that was the cause of her malnutrition. But her thyroid issue was still a mystery, especially at such a young age. She was started on thyroid medication and a PICC line was placed for additional medications and nutrition. After 3 days she was gaining weight and back to her old self. After giving her intestines time to heal the PICC line was removed and she started back on formula. 24 hours later, she was lethargic and losing weight faster than before. Arron was rushed back down to Radiology to have the PICC line replaced. There were still no answers to the cause of her symptoms. The doctors ordered a large panel of genetic testing, which takes about 3-4 weeks to get the results. It revealed that Arron has STAT3 Gain of Function Disease. Arron was then started on IV infusions, as well as some other medications, and she slowly recovered. She continued to get monthly infusions and had 2-3 appointments a month to keep her disease under control. Now, Arron is 5 years old and thriving. She has a yearly CT scan, has replaced the monthly infusion with a shot (Actemra) every 3 weeks, and only sees the Rheumatologist every few months. Her current medications are Actemra ACTPen, Sulfamethoxazole, Vitamin D, Acyclovir, and Levothyroxine.
We are so excited to share Arron’s story of perseverance and strength. Her recovery and management of the disease is an inspiration.

01/26/2024

Help support STAT JAK Immune Association by donating or sharing with your friends.

01/26/2024

We are so excited to be launching our new non-profit to raise awareness of STAT and JAK immune diseases. We are in the process of working on our logo and website and we need your help.

Please donate below to help us get started!

Help support STAT JAK Immune Association by donating or sharing with your friends.

01/14/2024

STAT JAK Immune Association unites our community to support one another on our journeys. Our focus is to walk alongside patients and families with STAT and JAK activating genetic mutations. We provide information, resources, financial assistance and support to families with these rare diseases. You are not alone.