Elias' Medical Bills

Over the past month, we learned that our little boy (Elias) has a rare condition known as Rhizomelic Chondrodysplasia Punctata (RCDP). Elias has type 1 (the more severe and common RCDP type).

We are fundraising to help pay for the mounting expenses related to Elias' medical needs. Insurance has been a blessing, and BlueCross has done a good job of giving us notices about prior authorizations for procedures. But, even after insurance, we still have a way to go. We hope this will help us recover some of what has been paid and some of what we still owe, as well as help us prepare for equipment he will need.

We estimate our current expenses below. These are the estimated totals for each, including GoFundMe's transaction fee. Brittany also had an ER visit due to her pancreatitis the week Elias had his cataract surgery. We are also still working on that bill and have listed it below.

≈ $8,652 for Elias and Brittany's extra hospital expenses/stay during the pregnancy

≈ $6,798 for Elias' Cataract surgery and glasses

≈ $6,283 for Brittany's ER medical bills (pancreatitis)

≈ $2,987 for Elias' Vanderbilt expenses. After insurance for MRIs and specialist visits (ophthalmology, neurology, genetics, orthopedics).

≈ $4,120 after insurance for additional occupational, physical, and speech (feeding) therapy

≈ $4,120 Elias' mobility and seating-related equipment

Total of ≈ $32,960

The heavy-hearted aspect of this diagnosis is that it comes with a reduced life expectancy. For RCDP1, current data suggests that most (80%) will survive until 5 years old. After that, the level of severity impacts their chances of continued survival. More mild cases (relatively speaking, since none are without exceptional challenges) are expected to live to about 10 years old (about 45%).Then, some (35%) have survived until adulthood (early 20s, a few into their 30s).

Based on Elias’s severity, it is reasonable to expect to have him with us until he is 5. Each year after will be a continued blessing should we have the honor and joy of getting to love on our little boy a little longer. Further testing might inform us differently, but the current forecast is that it will likely support the more severe diagnosis.

In any case, we know God is with us, and we know that Elias is unique and will live his own story. It is always possible that he will beat his prognosis. But, for now, we will focus our energy on pursuing the care he needs to make the most of the time we know we will have together.

We are still processing this news and genuinely appreciate your prayers while we continue to learn what this entails for our family.

We are reminded of Psalm 139.

[13] For you formed my inward parts;

you knitted me together in my mother’s womb.

[14] I praise you, for I am fearfully and wonderfully made.

Wonderful are your works;

my soul knows it very well.

[15] My frame was not hidden from you,

when I was being made in secret,

intricately woven in the depths of the earth.

[16] Your eyes saw my unformed substance;

in your book were written, every one of them,

the days that were formed for me,

when as yet there was none of them.

For those looking for more specific/detailed information, I have posted a summary from a link we received from our medical team. Then, there is a link to one of the organizations dedicated to this disorder.

Retrieved from https://medlineplus.gov/genetics/condition/rhizomelic-chondrodysplasia-punctata/

“Rhizomelic chondrodysplasia punctata is associated with significantly delayed development and severe intellectual disability. Most children with this condition do not achieve developmental milestones such as sitting without support, feeding themselves, or speaking in phrases. Affected infants grow much more slowly than other children their age, and many also have seizures. Recurrent respiratory infections and life-threatening breathing problems are common. Because of their severe health problems, most people with rhizomelic chondrodysplasia punctata survive only into childhood. It is rare for affected children to live past age 10. However, a few individuals with milder features of the condition have lived into early adulthood.“

Parent Friendly Definition of RCDP | RhizoKids

https://rhizokids.com/parent-friendly-definition-of-rcdp/