Sloane's journey with NEHI

For 2019, Knotty Tot has partnered with little baby Sloane to donate $1 from each Knotted headband to NEHI research. We were so inspired by Sloane's resilience and her super strong mama's tenacity to advocate for Sloane's care and answers for her daughter, that we knew we had to try to help any way we could. See below for a letter from Merissa, Sloane's mama, on their journey with NEHI, and how you can help #findSloaneacure and help other children with NEHI have #nomoreunknownfutures. 

---

 

a 3 month old baby sleeping in a hospital bed hooked up to oxygen and an IVAt 10 weeks old, my daughter Sloane was admitted to the Children's hospital for a month because her breathing was fast and labored. She was full term and as healthy as could be, leading up to this point. She had every test under the sun completed during that 30-day hospital stay and when we were discharged, we were told that Sloane did not have Interstitial Lung Disease and to be thankful and happy, for this is not something you'd want your daughter to have. My daughter was sent home on oxygen and we were told her body just needed some time to be weaned off. Today, Sloane is almost 10 months old and never did get weaned off oxygen. Oxygen is her lifeline and she is on it 24/7 and will be for an unknown amount of time.

 

a black and white photo of a mom and her baby. Her baby is on oxygen and wearing a toque. Mom is lovingly gazing over at baby and standing her up holding her handsThe day we got home, my research journey started as I knew something was still wrong. While every parenting journey is its own rollercoaster of ups and downs, parenting a child attached to an oxygen tube 24/7, who is failing to thrive, caused a level of anxiety that I couldn't stop to feel, because there wasn't time. Everything in our medical world is a wait, and I didn't have time to wait. I needed to get answers and I needed to help my baby girl. Countless phone calls, emails, doctor appointments, begging for care and 2nd opinions took over our days, weeks and months. Very long story short...Sloane does have Interstitial Lung Disease and the type is NEHI (Neuroendocrine Cell Hyperplasia in Infancy). Her CT scan was her ultimate diagnosis

Sloane scores 10/10 for the clinical symptoms, which include crackles, hypoxemia, tachypnea, retractions, barrel chest, failure to thrive and onset less than 1 year. Even with all of the research and answers we have found for Sloane, we have come up short. This is a very rare lung disease that has only been known since 2005 (80 registered cases worldwide) so the oldest patients are teenagers, with many still on oxygen. The medical world does not know what the actual underlying cause of NEHI is and whether the disease is genetic or environmental. All we can do is use supportive measures to help Sloane which includes oxygen and helping her gain weight.

a dad holding his baby on a deck. Both dad and baby are bundled up. Baby is on oxygen and smiling at the camera. We are in search of answers to help families understand what they are up against so that they don't have to be so scared of the unknown. I am scared, and these kids deserve better. It doesn't only affect the patient because if your kiddo can't get sick well mom, dad and siblings can't be bringing it home either, as a simple common cold will put Sloane in the hospital. It can feel very isolating. Personally, I feel like a failure if I don't save Sloane from additional preventable illnesses because her body is already in such distress. My current hope for Sloane is that we can one day get her reduced to just nighttime oxygen so that she can have some freedom from oxygen tubes and won't have to haul O2 tanks around with her for a portion of the day. That is what I pray for.

Carly Bush is the President of NEHI Research Foundation that supports scientific research aimed at improving the diagnostic process, treatments, and ultimately finding a cure. The Foundation is proud to announce that we are supporting Dr. Lisa Young's genetic research initiative at the Vanderbilt University. Sloane is currently enrolled as a volunteer patient and we could not be happier to be in the study.

 Your support will directly help NEHI Research Foundation fund future awareness campaigns, medical research grants, and help send patients to see the select few doctors specializing in these rare diseases. Knowledge is POWER. No more unknown futures.

---

100% of the proceeds raised through Knotty Tot will be donated in Sloane’s name to www.nehiresearch.org