Thank you for all the support of our family over the past four years since Josey’s birth and especially recently as we dealt with some unexpected medical issues in our family. Here is an update on Josey’s story and current circumstances.

We were surprised to learn at a routine ultrasound at 38 weeks gestation that Josey was small. After being referred to maternal fetal medicine for a more in-depth ultrasound, we learned she had intra-uterine growth restriction (IUGR). They said she was less than 4lbs and I could choose to have her “today or tomorrow”. Luckily tomorrow worked out, and after all my worry about her health throughout the pregnancy, when she was born, the worry disappeared because she looked absolutely perfect and healthy, at a small 3.6 lbs. She spent 16 days in the NICU for basic monitoring. We also learned that Josey has trisomy-21 (Down Syndrome).

IUGR is a pathological restriction of fetal weight. Placental insufficiency causes the reduced fetal weight and growth during pregnancy. The fetus is also deprived of an adequate supply of oxygen which can also cause impaired brain function. Josey was also discovered to have a small hole in her heart, a Patent Foramen Ovale (PFO), which we learned will close on its own, probably around the age 5 or 6. The degree to which these things have affected her development are unknown, but we feel that they have had some role. We do know Josey is a fighter with a strong spirit. It is a miracle for her just to be born and survive all the supposed odds stacked against her.

When we came home with Josey as a newborn, we started the county funded home therapy program. It never felt right to me, and Josey thoroughly despised it. We were told “Josey doesn’t want to do ‘xyz’ because it’s too hard”. We felt this wasn’t true, that there was another barrier to her development. At the age of 1, Josey was still an infant developmentally, and we stopped those services. We also looked into some alternative approaches to therapy, Josey had some small gains developmentally. We stuck with this method called ABM/Anat Baniel Method, which is rooted in neurodevelopment, over the year with a lot of breaks due to the pandemic. At the age of 2, Josey was still at infant level. We discovered Brain Bright in Toledo when Josey was around 2.5 years old. Brain Bright uses a holistic approach to treat the root cause of a diagnosis through neuroplasticity, essentially helping to “rewire the brain”. At almost 4, and in combination with a healthy whole foods diet, supplementation in needed vitamins and minerals, Josey is now showing us who she is! She has become an affectionate, giggly girl, and she has just starting hugging this year! It feels like a gift from God to get a hug from Josey.

Developmentally, Josey has not advanced when compared to other similarly aged peers with down syndrome. At this moment, our near 4-year-old is still mostly dependent like a baby. She can now sit on her own and can eat finger foods.

During our time at Brain Bright, we decided she was ready for physical therapy. And after a very stressful 4-5 months and no changes from a PT perspective, we had to take a break. It was during this time I remembered a conversation I had with a person when Josey was a newborn. They told us about a place called Sara’s Garden. They had known a child with down syndrome who attended there for Hyperbaric Oxygen Therapy (HBOT) and it helped tremendously. For Josey’s 4th Birthday in August, I would love to do HBOT for her. Everyone around her can see she is ready for more.

Hyperbaric Oxygen Therapy has been very successful in treating individuals with developmental disabilities. However, in the United States it is not recognized as being therapeutic for these treatments and is therefore not covered by insurance. That is why we could really use your help. HBOT for Josey’s condition is only $100 per treatment at Sara’s Garden (as opposed to $1,500-2,500 per treatment at a hospital). However, since our plan is for her to receive at least 40 HBOT treatments that cost adds up quickly.

If you could assist us with the cost (or even just part of the cost) of a single $100 HBOT treatment it would help reduce our overall expenses greatly. 100% of the funds received go into an account in Josey’s name and will be used for her treatments. Any contribution made would be considered a tax-deductible donation as Sara’s Garden is a 501(c)(3) non-profit facility. Checks can be made out to Sara’s Garden with Josey’s name on a sheet of paper accompanying the check. Please do NOT write her name directly on the check. You can also donate online via credit card by clicking on the DONATE NOW button below.

We are prepared to pay out of pocket like usual for Josey’s alternative therapies, but as they say: “If you don’t ask, you don’t know.” We would appreciate any donations to Josey’s new hopeful oxygen therapy, given that her mom also has another surgery scheduled this fall.

We love you all and thank you again for your continued support and understanding.

John, Jill, Jake and Josey