Mason On A Mission

10/25/2026

Happy World Spina Bifida and Hydrocephalus Day!
Mason was born with spina bifida and hydrocephalus!

10/13/2026

It's DAY 12 of Spina Bifida Awareness Month

There are several options for Spina Bifida Care for families in Kentucky seeking pediatric care. When it comes to care for adults with spina bifida, it gets a little more challenging. We will be talking more about that in the coming days.

10/11/2026

It's day 11 of Spina Bifida Awareness Month!

Today, we’re highlighting Ruth Madeley, a talented British actress who was born with Spina Bifida.

Ruth is best known for her roles in Years and Years, The Rook, and Doctor Who, and she has also been a strong advocate for greater representation of disabled people in the entertainment industry.

Her career is a great reminder that Spina Bifida is only one part of a person’s story. People with Spina Bifida are actors, athletes, artists, parents, professionals, advocates, and so much more.

What other famous people do you know with Spina Bifida?

10/11/2026

It's World Mental Health Day!

Spina Bifida doesn't automatically cause mental health challenges, but there is an increased risk. Protective factors such as supportive family and friends, community connection, opportunities for independence, and access to appropriate health care can make a significant difference.

What are some of the common mental health challenges?

Anxiety – Worries about health, surgeries, mobility, independence, school/work, or social situations can contribute to anxiety.
Depression – People with Spina Bifida may face increased risk of depression, particularly when dealing with chronic health challenges, pain, isolation, or barriers to independence.
Low self-esteem or body-image concerns – Scars, mobility devices, continence issues, or differences in physical appearance can affect how someone feels about their body.
Social isolation and loneliness – Accessibility barriers, difficulty participating in activities, or feeling different from peers can make social connection more difficult.
Stress related to independence – Adolescents and adults may experience frustration around needing assistance with personal care, transportation, employment, housing, or other aspects of daily life.
Executive-function challenges – Some people with Spina Bifida, particularly those with hydrocephalus, can have difficulties with organization, planning, attention, memory, or problem-solving. These aren't necessarily a mental illness, but they can affect school, work, relationships, and emotional well-being.
Adjustment and coping difficulties – Major medical procedures, changes in mobility, transitions to adulthood, or new health complications can bring emotional challenges.
Trauma-related symptoms – Repeated surgeries, hospitalizations, painful procedures, or difficult medical experiences can sometimes contribute to trauma or medical anxiety.

Mental Health Matters!

10/08/2026

Mason is partially paralyzed. He can crawl, climb, and cruise furniture but he can't stand or walk independently.

It's Day 8 of 31

When it comes to Spina Bifida, there are lots of misconceptions.

Not every person with Spina Bifida is a wheelchair user.
Not everyone who uses a wheelchair is a full-time wheelchair user. It's not uncommon to see someone get out of their wheelchair and walk. It's not a miracle, and they aren't faking "it".

What Spina Bifida Myth do you want to bust?

10/08/2026

Mason had to get a shunt at 5 months old because of his hydrocephalus.

Day 7 of 31

While we are currently celebrating Spina Bifida Awareness Month, September was Hydrocephalus Awareness Month, and Hydrocephalus is one of the most common secondary conditions of Spina Bifida.

Surgery is the only available treatment for Hydrocephalus. Placing a shunt is the most common treatment for hydrocephalus, but there are different types. Another option is Endoscopic Third Ventriculostomy (ETV), which creates a tiny hole in the floor of the third ventricle.

Do you know why Hydrocephalus and Spina Bifida are linked?

10/07/2026

It's Day 6 of 31

You may know John Mellencamp for hits like Jack & Diane and Pink Houses, but did you know he was born with Spina Bifida?

His story is a reminder that Spina Bifida does not come with a limit on what someone can dream, create, accomplish, or contribute.

People with Spina Bifida have diverse abilities, interests, careers, and experiences. Some are musicians and artists. Some are athletes, parents, teachers, professionals, advocates, and community leaders. Many are simply living their everyday lives, working, learning, creating, raising families, and pursuing what matters to them.

10/07/2026

It's day 5 of 31

Advances in medicine & technology have led to a nearly 100% fetal diagnosis rate in referral centers; however, some parents learn of their child's diagnosis after birth.

Diagnosis Stories are very impactful during Spina Bifida Awareness Month.

10/04/2026

🎗️It's Day 4 of Spina Bifida Awareness Month

AND today kicks off Latex Allergy Awareness Week!

Many kids with Spina Bifida are at high risk for developing latex allergies, and not just mild ones. We’re talking serious, even life-threatening reactions like anaphylaxis.

Why? Some studies suggest that children with spina bifida may have an inherited, higher likelihood of developing allergies to latex from birth; these children often undergo numerous medical procedures using latex-based products like gloves, catheters, and more. Each exposure increases the risk, and you can sometimes be exposed unknowingly.

💡 Latex is in more things than you think! Common hospital supplies and even items in your home can contain latex.

Allergies aren't always present at birth; they can develop over time. Your immune system becomes more sensitive to latex with each exposure. You never know how many exposures it takes to cause a severe reaction. Children born with spina bifida should be on a latex precaution to avoid unnecessary exposure. Parents are encouraged to stay vigilant for reactions, including those that may occur when exposed to certain foods that contain proteins similar to those of latex, such as kiwi and banana.

Not everyone with spina bifida will develop a latex allergy. However, the risk is significantly higher than in the general population, where the risk is less than 4%. Research shows that approximately 68% of children born with Spina Bifida will develop a latex allergy. Awareness of the potential for allergic reactions is critical, and appropriate precautions, such as avoiding latex when possible and choosing non-latex alternatives, should be taken.