Jamison’s Fearless EB Fight

Hi there, I think many friends, family and acquaintances have been feeling compelled to help Tiana and Eddie but unsure of how, so here we go.

Tiana Williams (daughter of Thor and Joanna Williams) and Eddie Stanley (son of Lisa and Eddie Stanley, Sr.) are from Bethel, Alaska. They are the parents of three-month-old Jamison who is the little brother of their late daughter Mia and sister Madilynn, and their second child diagnosed with a severe form of Epidermolysis Bullosa (EB), called Junctional Herlitz EB (JEB-H).

If you haven’t been following Tiana and Eddie’s journey, Epidermolysis Bullosa (ep-I-der-mo-lie-sis bu-low-suh), often referred to as “The Worst Disease You’ve Never Heard Of”, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating. (Dystrophic Epidermolysis Bullosa Research Association of America/DEBRA of America).

If you know Tiana and Eddie or their family and are already familiar with their journey, it’s easy to quickly be drawn to their story and feel the need to help in some way. So far, I’ve done nothing more than message Tiana with words of encouragement and support over the years. The desire to help in some way has been pressing since their daughter Mia was born and I’m finally putting my thoughts into action by setting up this fundraiser and asking anyone who’s been feeling the same to consider joining me.

I've followed Mia's journey and now Jamison's since Mia was born shortly after my first daughter, Ava (one of the reasons their story immediately drew me in and began tugging at my heart strings). They're also a Bethel family, I'm from Bethel, both of our pregnancies we were due within a month of each other. Annabelle and Jamison just a month apart - born in June and July.

I write this first and foremost as a fellow Mom to Tiana. While my baby Annabelle became fussy and feverish after her 4 month shots tonight, my heart ached a bit as I rocked her in my arms and thought of ways I could make her more comfortable. Moms (and Dad's)understand the helpless feeling when your child is sick or in pain. As a Mom of two healthy girls, the “normal” daily struggles of parenting and common illnesses can feel overwhelming and frightening at times – that said, it is very, very difficult for me to imagine caring for a child with such intense needs and daily pain.

I empathize – Imagining pain and suffering being an everyday part of my child’s life, imagining my flawless newborn developing painful blisters day by day. Imagining caring for and nursing my innocent three-month-old infant’s painful blisters. Imagining the slightest friction producing agonizing wounds on my baby’s soft newborn skin. Imagining wanting to hold my sweet little baby to comfort her and smother her with love but I can’t, because my gentle touch will likely damage her fragile skin. I imagine the emotional toll it would take to care for my child’s constant, painful and disfiguring wounds - the effects of a disease which has no treatments or cures.

Tiana’s days caring for Jamison involve blister puncturing. She administers strong pain medication and then must then puncture and drain Jamison's blisters daily to prevent infection. This process is extremely painful for Jamison, even while on strong pain medication. Tiana has to change bandages, this step often takes hours. She applies each bandage slowly and carefully, one by one to protect damaged skin and reduce the chance of infection to Jamison's oozing, open wounds - again, this is extremely painful for Jamison despite strong pain medication.

Jamison is currently in Denver visiting his specialists. The plan was to insert a feeding tube into his stomach (gastrostomy tube or G-tube), but Jamison became ill and ultimately needed to be hospitalized for a blood transfusion, fluids and antibiotics. It was decided it would be too risky to have surgery at this time so instead, a nasogastric (NG) tube was inserted to deliver supplemental nutrients and fluids to Jamison. This supplemental nutrition  provided through the NG tube is a crucial part of Jamison's care. Blisters in and around his mouth and esophagus make it difficult to eat and possibly difficult to swallow in the future, which leads to poor weight gain and poor nutrition. Without proper nutrition, it  becomes incredibly difficult for his body to heal his wounds. 

In order to give Jamison the best care possible and ensure he meets with specialist as needed, Tiana and Eddie face spending extended time away from friends and family and the comforts of home, carrying a fragile infant at high risk of infection through busy airports and airplanes.  That's time away from their support system and immense amounts worry, constant worry. I have constant worry and my girls are healthy.   When Ava was born, we spent one night admitted to inpatient pediatrics for newborn jaundice, one night and I wanted more than anything to be home.

Thank you for taking the time to read this. Tiana and  Eddie have never asked for any kind of help that I’m aware of. I spoke with them before starting this fundraiser and can I assure you they will be the most gracious recipients. Your donation will help cover expenses associated with being away from home, being unable to work, and of course Jamison’s extensive medical expenses.

Hats off to all parents caring for children with EB or any other chronic illness, you are amazing.