Jessica and Jenn are friends that share a common bond. They each have a child with a rare disease called FPIES (Food Protein Induced Entrocolitis Syndrome).
FPIES is a type of food allergy affecting the gastrointestinal tract. Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests.
Jessica wrote to us specifically about Jenn’s daughter, Sarah. She said, “Sarah is 11 years old and has FPIES just like my boy Wyatt. She is also on the most severe end of the spectrum of this disease. Basically, this girl lives off of about 8 ingredients and a slew of medicine to survive. You see, when kids like my Wyatt Boy, and sweet Sarah eat food, they have vomit to shock reactions that are life threatening and very scary. They often have poor growth, and many other issues that are results of this disease. There is no cure, no reasoning to why it’s happening, and very few doctors who have even heard of it.”
Jessica told us about her friend, Jenn, too. She said, “Jenn is a fierce advocate for children with special needs, and most especially those with FPIES. She has worked for many years volunteering for many organizations such as The FPIES Foundation, Sarah’s FPIES Clubhouse (an organization she started so that Sarah could find friends, that has morphed into an incredible support and advocacy group for families with FPIES), Andrew’s Special Kids, as well as helping lobby on several special needs bills in her state. Jenn has dedicated her life to helping special needs families, and for her family. She fights everyday to keep her daughter alive, and to help her progress and function as a child her age should.”
When Jessica wrote to us, Sarah’s doctors had begun a new experimental trial to help heal her bowels and GI tract from severe inflammation and nerve damage. The treatment included spending an hour in a special hot tub each night to help repair her bowels, at least partially.
Jessica thought that for Jenn having such a tub at home “would be such a huge blessing for her, and literally change her whole life.” Being a single parent on a tight budget, Jessica knew Jenn could use some help to purchase the tub.
You sent the inflatable spa with accessories to help heal Sarah.
This story reflects the invisible realities we believe in, which are:
We Belong To Each Other
Small Things With Great Love Will Heal The World
There is No Such Thing as Other People’s Children.
Your babies are our babies. And we stand in awe of your love and pain. It’s not fair that your babies are sick. It’s not fair. Just know that you are seen and you are not alone. We ache with you.
Both Jessica and Jenn serve on the Parent Advisory Panel or Volunteer Committee’s and work together with the Foundation Board of Directors and Executive Directors to undertake projects and complete tasks vital to the progression of the goals and mission of The FPIES Foundation.
For more information on The FPIES Foundation, please visit: http://fpiesfoundation.org/
If you’d like to donate to the healing, uplifting work of Together Rising, please go to: https://togetherrising.org/give/.