Bennett’s Story

07/22/2025

Our big boy has been thriving lately 🩵

07/02/2025

We’re late posting for AMC Awareness Day (June 30th) but Bennett had a hard day and did not feel good after his therapy! He tried out a walker that morning and it wore him out fast so he was ill the rest of the day! 🩵

06/29/2025

✨ Day 24 Fact: “With full exome sequencing, more genetic links to arthrogryposis are being found on a regular basis.”

✨ Day 25 Fact: “ZC4H2 is an x-linked form of arthrogryposis found in boys and girls. Individuals have abnormal muscle tone and learning differences, not common in most other forms of arthrogryposis.”

✨ Day 26 Fact: “20-30% of babies born w/AMC will pass away in the newborn period because they have a lethal genetic type or have severe central nervous system dysfunction.”

✨ Day 27 Fact: “PIEZO2 on the 18th chromosome is related to a form of distal arthrogryposis often associated with narrow stiff clubfeet, long stiff skinny fingers, & stiff spines at risk for significant scoliosis.”

✨ Day 28 Fact: “Having good bone density is important for those who have arthrogryposis; therefore, taking vitamin D is sometimes helpful.”

✨ Day 29 Fact: “MYH3 gene on the 17th chromosome is associated with Freeman-Sheldon Syndrome, Sheldon-Hall Syndrome, and can be associated with Escobar Syndrome.”

Help us turn the world ! 💙

06/29/2025

Our silly boy this morning 🩵

06/23/2025

Some more pictures of our big boy living his best life at Shriners last week with his Gaga and pawpaw 🩵

06/23/2025

✨ Day 20 Fact: “Common joint contractures with arthrogryposis include: Clubbed feet or vertical talus, extended or flexed knees, dislocated and/or externally rotated hips, internally rotated shoulders, extended or flexed elbows, flexed wrists, adducted thumbs (stuck-in-palm), fingers fi**ed or extended.”

✨ Day 21 Fact: “Most kids with arthrogryposis grow up to be successful adults. In fact, a recent study showed that adults with AMC tend to get degrees of higher education at a greater rate than the general population.”

✨ Day 22 Fact: “Some children with arthrogryposis who are born with joint contractures may have hypermobile joints in other parts of the body.”

✨ Day 23 Fact: “Some children with arthrogryposis who are born with joint contractures may have hypermobile joints in other parts of the body.”

Help us turn the world ! 💙

06/20/2025

Our big boy traveled to South Carolina today with his gaga and pawpaw for new splints and his post op surgery appointments tomorrow 🩵

He was not happy about having to splint his arms today, it wore him out fast 🫶🏼

Buttttt look at that arm bend !! 🙌🏼😊😊

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06/19/2025

Some updated progress I never posted..

A few weeks ago Bennett had an evaluation for an augmentation device and he did amazing! We are in the works of getting a device for at home.

Our therapists truly are amazing and make things happen for our boy! 🩵

06/19/2025

We’re a little behind this week!
Days 15-19

✨ Day 15 Fact: “There is no cure for arthrogryposis. The goal of treatment is to maximize independence in activities of daily living.”

✨ Day 16 Fact: “Many of the genetic forms of AMC are presently called by the specific gene mutation. It is like giving a house address in the town called arthrogryposis.”

✨ Day 17 Fact: “Knowing the arthrogryposis' genetic cause helps to drive future medical treatment strategies.”

✨ Day 18 Fact: “About 1/3 of cases of AMC are amyoplasia type, which is non-genetic & sporadic in the population. There is no known cause for amyoplasia.”

✨ Day 19 Fact: “Some individuals with arthrogryposis do not have an identified type.”

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06/14/2025

✨ Day 14 Fact: “Bruck Syndrome is a form of arthrogryposis that also has brittle bones.”

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06/13/2025

06/13/2025

✨ Day 11 Fact: “Arthrogryposis is often a symptom associated with other disorders.”

✨ Day 12 Fact: “Arthrogryposis treatment often includes: Stretching the joints, serial casting, physical, occupational & speech therapies, bracing, tendon releases & lengthening, osteotomies (bone cuts), & external fixators.”

✨ Day 13 Fact: “Researchers have now identified approximately 500 distinct types of arthrogryposis.”

So far Bennett has had 10 sets of casts on his lower extremities, 4 sets of AFOs, 1 set of KFOs, 4 arm splints (2 for each arm), 2 different neck collars

The AMC related surgeries he has had are Achellies tendon release twice on both feet , plantar fascia on both feet, right hip reduction, wrist surgery on his right wrist, humeral osteotomy on his left arm, Botox twice in the left side of the neck.

He has had countless hours of therapy. Pt, Ot, and speech.

We have continuous appointments with orthopedics, pops, neurologist, cardiologist, ent, gi, nutritionist, & many more.

Help us turn the world ! 💙