Jhett’s Journey

Hi! I am Jhett’s mom, Jill.

If you have been following along, Jhett has had a rough road since being in my belly.

He was an IUGR baby (Intrauterine growth restriction), making our pregnancy high risk. While getting our weekly scans we found out that there was an umbilical vein varix which was causing a lack of possible nutrients and blood flow.

Jhett was born full term but at a low weight, and since birth has been considered and now diagnosed with “Failure to Thrive”.

At 4 months old, Jhett is still just around 9 lbs.

Jhett is also allergic to milk protein and drinks Nutramigen, a sensitive hypoallergenic formula that is extremely expensive.

Jhett’s medical bills have started to really pile up and because I am out on unpaid FMLA to take him to his 5-7 appointments every week, we are falling behind on necessary medical interventions.

Something I’ve had trouble sharing is that Jhett is being tested for 2 very rare genetic conditions called Noonan Syndrome and Russel Silver Syndrome. He is being seen by the genetic counseling team at Hasbro. We are awaiting results on those.

He also sees therapists and clinicians at Hasbro’s feeding program which includes OT, Speech (for swallowing), PT (for his torticollis) and weekly outpatient weigh ins.

Jhett has been fitted for a helmet and although our insurance covers a portion, we also need some help with the rest of it.

As I have stated, we have done everything we can and will continue to do everything we can, but our village is small and with my other son Jayce starting his own early intervention… life is just chaotic!

If you cannot donate, please share!

I truly wish we didn’t need to ask friends and family for help, but we need it right now for Jhett.

*For reference on the two medical conditions that Jhett is being tested for, please read below*

Noonan Syndrome:

Noonan syndrome is typically a genetically inherited disorder with heterogeneous phenotypic manifestations that can change with age. The most consistent features are wide-set eyes, low-set ears, short stature, and pulmonic stenosis. Noonan syndrome is typically inherited in an autosomal dominant manner. It is also associated with Congenital Heart Conditions.

Russel Silver syndrome:

Russell-Silver syndrome (RSS) is a rare disorder characterized by intrauterine growth restriction (IUGR), poor growth after birth, a relatively large head size, a triangular facial appearance, a prominent forehead (looking from the side of the face), body asymmetry and significant feeding difficulties.

Thank you for your help!