“I absolutely feel that my greatest lessons and blessings have come through the hardest times. I try to embrace each day and be present with the girls. It has taken me 5 years to believe that me being a stay at home mom is an important job in our home. In my previous career I was in control of my day and I could cross all my tasks off of my list. I felt like I was accomplishing things each day. I struggle with trying to control things that are so far out of my reach. I struggle trying to control Addy’s disease. My therapist once related it as trying to arm wrestle the universe. We have received such an outpouring of love and support from our community and family. I have struggled with feeling deserving of strangers kindness and generosity. I have cried through many therapy sessions wondering why we were chosen to be so incredibly blessed. I wouldn’t choose my life to be any different. Addy is here to teach me and everyone who knows her. Her life has great purpose.”—Lisa Weith
Seventeen days in the hospital in New Mexico resulted in no diagnosis. It did, however, result in a decision to leave New Mexico to be closer to family. The Weith family moved to Michigan. With each side of the family equidistant and in a comfortable, few hours drive, they would have support they needed that just wasn’t logistically possible in New Mexico. Eric’s company allowed him to transfer his job. Their house sold and the sweet family of four would be back to where snow, seasons and family would season their lives.
Through Facebook groups for moms of multiples, Lisa began to gather names for pediatricians. Michigan offered a First Steps program for children Birth to three years old that provided therapies and services to help Addy. As Norah met each developmental milestone at the normal pace, Addy needed intervention. The therapists helped the Weiths set up appointments.
Addy was seeing a Gastroenterologist in Michigan and using a feeding tube. At nine months old she received an MRI due to a scalp hemangioma (birthmark). This would serve as a baseline for her in the coming years. Addy began to walk at 22 months. She continued having feeding issues and had developed tremors. She suffered from Constipation. Lisa kept a detailed notebook documenting all of Addy’s health issues. She knew there was something happening with Addy, yet she had not found a doctor who seemed able to diagnose the issues.
At two years old, Lisa took Addy to a Neurodevelopmentalist to try and get some answers. The specialist ordered a repeat MRI. The MRI showed symmetrical spongiform legions on her brain stem. Lisa was referred to a Neurologist within thirty minutes of the MRI. Panic set in when the appointment was made for the very next day. Lisa knew that appointments were not that quickly obtained unless there was something substantially wrong. Through her own google search, Lisa was overwhelmed by the negative things she found. However that search, along with the notebook of medical issues Addy had endured for her two years of life, brought the term Leigh Syndrome to her attention.
The visit with the neurologist did not go exactly how she thought it would go. The neurologist was really casual. He said, “Things look good.” He didn’t feel that a diagnosis of a metabolic syndrome applied to Addy. Lisa felt that she, but more importantly Addy, was being blown off by this doctor.
There is a fine line parents of chronically ill children, particularly children without clear diagnoses, have to walk. With so many and varied issues, parents can be categorized with Munchausen Syndrome by Proxy. Yet, when children, such as Addy are suffering from illnesses without a clear diagnosis, the parents have to advocate for their children. Norah was thriving. There was a clear difference in the health and development of the two girls. Lisa knew she had to keep her notebook with solid evidence of medical, provable issues. She also knew she had to fight for her daughter.
She reached out to a friend in the medical community who sent their MRI findings to another doctor to get a second opinion. This doctor believed that it was in Addy’s best interest to pursue diagnostic testing to rule out metabolic issues. With this new information, Lisa went back to the Neurologist and insisted on bloodwork being ordered to rule out metabolic issues.
The bloodwork came back abnormal with indicators of lactic acid abnormalities. The doctor believed it had to be lab error. When Lisa suggested they do the bloodwork again, the doctor suggested the lab was competent and knew what they were doing. Lisa’s frustration with the neurologist lead to her own research.
Putting all the pieces together and researching with all the information, Lisa found a new specialist, a Genetic Specialist. “The geneticist was understanding and kind. I was so relieved, someone finally believed me!”
Gathering all the reports, lab work, history, and Lisa’s detailed list of symptoms, this specialist finally offered a diagnosis: Mitochondrial Disease. Lisa was told over the phone the mutation number—as she googled the information: Leigh Syndrome. It is very rare. It is terminal. But also, Addy was diagnosed with MELAS (Mitochondrial Encephalopathy, Lactic acidosis and Stroke). 1 in 100,000 to 140,000 children are diagnosed with Leigh Syndrome.
Before the medical intervention could come for Addy with a specialist at the Cleveland Clinic, Lisa and Eric began to feel some relief. “We had been at war with an unknown enemy. Now we have a diagnosis, which means we can be given a battle plan. We knew what we were dealing with finally.” The doctor at Cleveland Clinic is among the most prestigious in the field. As a researcher, his specialty gives the Weiths access to the most up to date information and treatments. They visit the Clinic yearly.
Back in Michigan, a team of specialists were found to handle Addy’s health care. Many of the specialists require yearly follow up appointments to monitor systems that can be effected by the Mitochondrial Diseases. Others are consistent in her care more regularly.
As Addy and Norah approach their sixth birthday, Norah is loving Kindergarten. Addy is in a Pre-K program. Developmentally, Addy is delayed behind her twin sister. Norah has taken on the nurturer and helper tendencies of an older sister. Her independent spirit continues to allow Lisa the time needed to care for Addy. “She sends me signals when she needs some attention though. I then make sure there are days just for the two of us. And snuggle time just for her.” The dedication between the sisters that caught my attention in Florida last summer is a clear part of this family’s dynamic. “
“Norah leaves notes everywhere. This paper was on the bathroom floor and I am so thankful I read it before it went in the recycle bin.
I have to say it kind of choked me up a bit. For anyone who can’t read “kindergarten” it says…
Wat will I do with out you?”
Addy’s Disease is progressing. Lisa is available to her 24 hours a day. Addy was going to school before the Pandemic and many of the precautions the general public are taking now have been commonplace for Addy. But even during the school day, Lisa was on call. She fielded calls and pick Addy up as needed when her day was not going as planned.
The daily regimen for Addy includes feeding tubes, breathing treatments, therapies, training, hugs, play and giggles. She sleeps in a sleep safe bed and Lisa tends to her needs day and night.
“When I think about the future, I sometimes get lulled into a ‘normalcy.’ I am just a normal mom. When things are going well, I forget that I am special needs mom. My mantra in thinking of the future comes in two thought processes. Sometimes I think, maybe we did catch this early enough that we have the right things in place. She is a little delayed, but maybe she can have a successful life. Maybe a little job.
But then, like in times like this, with the Coronavirus, I wonder, will this be what takes her? With each sickness I cry out ‘God, It’s not time! I need more time!’”
Lisa was reminded by an older friend, “She was never yours to begin with. They are all here for the time it takes for them to teach what they are meant to teach.” Addy is impacting lives in significant ways. “She just moves people. Makes it hard to not realize who she belongs to.”
The Weiths, recognizing the fragility of life, are dedicated to making a lifetime of memories for their girls. From s’mores parties on a weeknight to Princess Tea Parties at Disney, every moment has special value. “Addy is such a snuggler. When she hugs she really holds on. The old me would have given her a quick hug and then want to move on to whatever was needing to be done. But now, I just hug her for as long as she wants to hug. I want to remember that moment. Really be in that moment. I never know, will this be the last hug? Will this be the last Christmas? We try to really make every moment count.” Two of Addy’s friends with Mitochondrial Disorders passed away last year. One was two. The other eight. “I think about how their moms didn’t know what were the lasts.”
Addy has today. We as a people have the ability to come together to protect her and the numerous others in our own neighborhoods, young and old, who would lose battles with Covid-19. Some may say that only the vulnerable will be at risk. Addy is one of the vulnerable. By not taking seriously the social distancing, by not staying home, the risk grows for her exponentially. Let’s vow to protect Addison. She is just like us—-she just has different clothes.