Erinne Rose William
2023 Sandra Sagear Wall of Courage Honoree

Erinne Rose William, Part 1

Erinne is a survivor Erinne Rose Williams, age 26, was diagnosed at 14 months with Spinal Muscular Atrophy (SMA). SMA is a genetic disease much like Lou Gehrig’s disease, but for babies. Erinne starting showing signs of something being wrong at 7 months. Her mom took her from doctor to doctor, trying to find out what was wrong. They all brushed off her concerns. Finally, a pediatric neurologist gave a definitive diagnosis. Spinal Muscular Atrophy.

What is that? We had no idea. The doctor said to take her home and love her. There was nothing that could be done. And she would not see her 8th birthday. WHAT??? How could he say such a terrible thing!! Erinne received her first wheelchair at age 2 ½. She did walk with a walker and knee immobilizers for about a year until a horrible pneumonia robbed her of the ability to walk. Such a disappointing time. In May of 2001 at age 4 Erinne under went a minor outpatient surgical procedure. Things went horribly wrong and Erinne crashed. She was placed in the Pediatric Intensive Care Unit (PICU) on life support. She coded 6 times.

 The doctors held little hope. Her existence was hour to hour. I prayed to God to let her live another hour. Erinne was in a coma at this time. She was in multiple organ failure. The doctors said it was time to let her go and take her off life support. They felt her brain had been damaged from a lack of oxygen during the 6 codes. They says she would never be the person she once was. I prayed about it. I told them God’s not telling it’s her time yet. I forbade them from unplugging the machines keeping her alive. They shrugged their shoulders and let things be.

Little by little she made baby steps towards progress. She was on life support for 85 days. They tried to take the breathing tube out and failed 6 times. They wanted to trach her. I refused. I had been in contact with a doctor in New Jersey who was considered to be a world expert in SMA and he believed Erinne could be successfully extubated (breathing tube removed) if they followed his protocol.

I met with the Head Intensivist and begged him to call the doctor in New Jersey. He agreed, but only if I agreed to a trach (hole in the neck to breathe through) when the protocol failed. They followed the protocol and Erinne was successfully extubated. We went home 5 days later. Total stay 101 days.

The Head Intensivist took me aside before we left and told me, “I learned a lot from Erinne that I will never forget.” Erinne came home a very weak and frail shell of her former self. She could not sit up. She did not have strength enough to lift her hand up to scratch her nose. She had no head control. She could not eat. All she could do was lay flat like a newborn baby. She came home from the hospital with a feeding tube. She was on the wrong formula which was making her stomach bleed and causing severe abdominal pain.

I turned to other SMA families to find out what they were using and got Erinne’s doctor to prescribe that. It worked and she is still on it to this day. Erinne was put on a bi-pap and a Cough Assist machine because her lungs were very weak. (The doctors in the ICU refused to provide these 2 machines because they said it was “barbaric” and how could I do that to my child?) these very machines have saved her life many times. The only “brain damage” from the lack of oxygen was that she lost a chunk of her memory.

We had taken her on a Make A Wish trip to Disney World 6 months prior to the medical incident. And we celebrated her 4th birthday. She has lost her memory from all of that. Small price to pay over almost losing her life. It took Erinne 2 years to recover from that catastrophe. She was never able to walk again but regained the use of her hands and was able to drive her power wheelchair.

We left that hospital’s care because they would not support our use of the bi-pap and the Cough Assist. We moved to another children’s hospital where they had never used these machines with SMA before. They literally threw their hands up in the air and said, “She came in here with these machines at these ridiculous settings !” Little did I realize that Erinne became a trailblazer that day.

Other SMA families began contacting us, trying to get their children on the same machines as the hospital was refusing to provide them. Erinne and I started going to appointments with these families which left the hospital clinic with no choice but to give the parents what they asked for – all because of Erinne.

The many parents had the same battle over the specialized formula Erinne was on and nutritionally was at the top of her game. It took the parents saying to the doctors, “We want the same diet Erinne Williams is on.” One family in the PICU at the old hospital Erinne was at was told that they didn’t stock the formula and that he’d have to go on the same formula that made Erinne’s stomach bleed.

We took 4 cases of formula up to the PICU so this little boy could have the right nutrition. And we made sure the doctors knew that it came from trailblazer Erinne Williams. Because of the success Erinne had both with the nutritional diet and the machines and all of the children thriving on these things, the hospital was almost forced to sign on to the Standard of Care for SMA which was being developed nationwide.

And for Michigan, it all started with one trailblazing girl, Erinne Williams. Erinne started school and was welcomed with open arms. The students saw Erinne as a person, not as a kid in a chair. In third grade we flew to Georgia to pick up her first Service Dog, Latte. Erinne was 8. Training was 2 weeks and it was rigorous. Erinne had to take a written test each day. She had to take a final exam at the end of the 2 weeks of training.

She was the youngest person to score 100%. She also had to take a practical exam in the mall, demonstrating that she had full control of her dog at all times. Latte and Erinne were a match made in heaven! Erinne was the only student in the school district who brought her Service Dog to school with her to elementary school. Latte was remarkably well behaved and was loved by all the students.

One parent did complain about her daughter’s allergies. The principal said so your daughter’s allergies are of higher priority than this child’s disability? He moved her to another classroom. Erinne fought off dozens of pneumonias and hospitalizations and each time we had to fight for her protocol to be followed. Many doctors did not understand it but let us be. We brought our own machines everywhere we went. We ran into SMA parents everywhere that wanted to know how to get the machines.

We taught them how to be staunch advocates for their children. This was unfamiliar territory for most of them. Erinne emphasized that they know their child best and always trust your gut. Doctors don’t know everything about this rare disease. It’s your job as a parent to know this disease inside and out. Erinne graduated from Plymouth High School with Latte at her side. They walked across the stage together, with Latte sporting her own graduation cap! Such a proud moment and an occasion I never thought I’d see.

Erinne is a sports girl and plays wheelchair hockey, soccer and baseball. She is captain of her soccer team. She’s been to 2 different camps for more years than we can count and had the time of her life! All the girls at camp came with all of their machines in tow.

When Erinne first came to MDA camp, she was the first child with SMA that lived long enough to attend MDA camp. Not too long ago, without any mechanical intervention, children with SMA died in infancy or early childhood. Erinne successfully blazed the trail once again. Erinne is considered “old” at age 26 as far as SMA is concerned. She still helps out newly diagnosed families and gives them HOPE that their child will live to be 26, and beyond.

There are many new treatments and gene therapies out there (which Erinne is too old for.) which lessens the deterioration of SMA. Or stops it from progressing at all. But in Michigan, there was one girl who made all the difference in the SMA world. And her name is Erinne Rose Williams.

Submitted by Suzanne Budenaers Yopek Williams, Erinne’s mother

Erinne Rose William, Part 2

So back to the story of Erinne’s Journey with SMA….Erinne was able to start kindergarten (another milestone I did not think she would reach) at St. Matthew Lutheran Westland and had an incredible teacher, Ann Pfeiffer. I loved the fact that she was receiving the same Christian Education that her brother and sister received. She attended 1/2 days and her dad and I took turns being with her in class. (She needed to have someone with her as an aide at all times. Ms Cheryl Rujan also helped us out.)

When it came time for first grade, the Westland Public Schools would not provide Erinne with any of the support services that she needed at St. Matt’s (an aide, PT and OT, equipment, etc.) so sadly, I had to pull her out of this wonderful school and put her in public school. She had some wonderful teachers at Madison Elementary in Westland. She attended there 1st-3rd grade. For the most part, she was relatively healthy, in large part due to her specialized tube feeding, and her Cough Assist and Bi-Bap machines.

This was also a time of “firsts” because she went to the week-long MDA Camp at Camp Cavell– without me. It was our very first time ever, in her 6 years of life to ever be apart. (And believe me, I did not deal with it well! It was harder on me than it was on her!) Her camp partner, Liz Orvis to this day never lets me forget that I brought Erinne to camp with 8 (EIGHT) pages of single page typed notes. (!) I was a nervous mom, what can I say? Erinne attended camp every year for the next 9 years and LOVED it! It was the high-point of her year.

During the spring of 3rd grade, (Erinne was not quite 9 years old yet), we traveled down to Georgia, to Canine Assistants to be matched with her special service dog, Latte! Erinne was such a shy, quiet wallflower of a girl who just as soon as have you not notice she was sitting there in a wheelchair. Latte changed ALL of that! Erinne and I went through 2 weeks of intense training to earn the privilege of bringing Latte home with us. Erinne had to take a written test every day, go on field trips out in the public to prove she could control Latte, and in the end, take a final exam and a practical exam, all without my help, to prove she deserved to be matched with Latte.

Erinne was the youngest person to score a perfect 100% on the written final exam. During our time at training camp, her third-grade classmates kept track of her progress by the notes and pictures I sent to them each day, chronicling the day’s adventures. When she returned from training camp with Latte (who was not quite 2 years old), she and Latte were welcomed back to school with open (excited!) arms. Latte attend school part time through the end of the school year. She was a blessing to everyone who met her. And Erinne absolutely blossomed from that shy wallflower of a girl to an outgoing, talkative young lady who loved to tell others about how great having a service dog was and how Latte had changed her life.

Submitted by Suzanne Budenaers Yopek Williams, Erinne’s mother