Local family praying for a miracle

SUBMITTED PHOTO
Pictured at right Mollie and Madelyn are all smiles. The beautiful children of Jeff and Mandy (Toops) Ronaldson have been diagnosed with a fatal disease, Juvenile Sandhoff. Family and friends are not only lifting them up in prayer, but are supporting an effort to raise money to find a cure for the rare disease.

Wanda English Burnett
EDITOR

One day the Ronaldson family was just like every other family – loving their children, going through this life with expectations of birthdays, graduations, perhaps even weddings. But, that all changed when Jeff and Mandy (Toops) Ronaldson noticed their two younger children struggling with things they had already mastered. The couple met while attending Judson College in Elgin, IL. Mandy is a 1994 graduate of South Ripley High School.

“We had been seeking doctor’s help for a couple of years regarding Mollie, who was showing regression in school with skills she had already mastered and with behavioral issues,” noted Mandy. She said Madelyn, was also having physical issues such as muscle weakness, which resulted in a lot of falls.

“After seeing many doctors and ruling a lot out, we were sent to a geneticist,” Mandy told the Versailles Republican. The doctors there thought the sisters’ issues could be related and would soon find out they were – both having Juvenile Sandhoff disease, which is so rare, there are no known cases in the United States. The Ronaldson’s have met families with children diagnosed with the infantile form and have met two adults with late-onset Sandhoff disease. They have also been in contact with two families in Europe through e-mail that have the juvenile form like their daughters. That’s it.
Sandhoff is such a rare disease, it’s hard to diagnose, - and there is no treatment. This disease is caused by the absence or significantly reduced level of two vital enzymes: Hexosaminidase A (HexA) and Hexosaminidase B (HexB). Without these enzymes, a fatty substance or lipid called GM2 ganglioside accumulates abnormally in cells, especially in the nerve cells of the brain. This ongoing, accumulation, also called “substrate” causes progressive damage to the cells.
According to information from the National Tay-Sachs & Allied Diseases Associaition (NTSAD), the symptoms with Juvenile Sandhoff disease, appear after the first year of life, usually between the ages of two and five. But, they can occur anytime during childhood. Early symptoms include lack of coordination or clumsiness and muscle weakness. The disease is terminal for children affected by the infantile and juvenile onset. Mandy noted that their doctor was grieved to give the devastating news to them in April of 2016.

Until the girls were three and five, they lived normal lives. “Mollie loved to run up and down the sidewalk chasing her friends, and would swing forever by herself,” noted her mother, who added, “she LOVED to sing”. Madelyn also loved to sing, dance, play with her older brother Aaron, who is a sophomore in high school and older sister Emma, who is an eighth grader. While Mollie, now 11, can no longer swing by herself, she still loves to sing. “Madelyn (now 8) can no longer form words and speak sentences, but she does still make many happy sounds and is filled with joy most of the time,” Mandy noted.
“Our lives continue to change everyday,” Mandy continued. “We see progression of this disease frequently as the girls continue to lose skills. Our daily living is very involved with the increasing needs of Mollie and Madelyn and also keeping up with the ‘normal’ needs of two teenagers.”

Even with all of this, one thing has not changed for the Ronaldson family -their faith still holds. Mandy went to college for her bachelor’s degree in youth ministry/adolescent studies. She has been a youth pastor in Pontiac, IL. While nothing there prepared her for what she and her husband would face with their youngest children, Mandy says, “knowing that the Lord is Sovereign over all things, we try our best to get through each day leaning on Him.”

Their goal is to raise awareness about Juvenile Sandhoff disease even though there is no cure or even a treatment at this time for their children. “Many times when we meet new doctors, we end up educating them on the disease,” Mandy noted. The sad part is when no one knows about a disease such as this, that means there is little funding going towards research.

The family pushes forward with becoming a part of a non-profit organization called The National Tay-Sachs and Allied Disease (NTSAD) who has offered them information and family support and maybe more importantly a connection with other families with children with similar diseases.
Mandy shared that through NTSAD there is “Hope on the Horizon” for a possible clinical trial being available as soon as next year and their daughters could be a part of it! But, funding is needed. So the family is extremely grateful to their family, maternal grandparents, Terri and Roger Toops, and friends from the Hopewell area who have put together a “Racing for Results” event at the Hopewell Baptist Church on November 10.

The Ronaldsons say, “While those gifted in the medical field work out a solution, we ask first and foremost for continued prayer in that God would allow the girls to be completely healed. We as a family are holding on to God’s Word.” They refer to the scripture in Philippians 4:4-7 that reads in part..’be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God..’

As their beautiful daughters continue to grow physically, they ask for prayer for their family unit as a whole. They also invite you to the fundraising event. If you can’t get to the event, but would be willing to give, you can go online to: ntsad.org/m-and-m-donations. You can also follow the girls on their Facebook page at “Miracles for Mollie and Madelyn”.

Racing for Results

Miracles for Mollie & Madelyn Ronaldson Racing for Results Fundraiser is set for Saturday, November 10 from 8 a.m. to 5 p.m. at the Hopewell Baptist Church near Holton.

The Racing for Results will begin with registration at 8 a.m. The 5K Walk/Run will begin at 9 a.m. with a brunch at 10 a.m. At noon there will be family fun with games for kids, face painting, food, entertainment, and much more.

The day will continue with a Sing-Off for Sandhoff at 1 p.m. with a singing competition. A silent and live auction will be held at 3 p.m. with tons of great items according to Terri Toops, who, along with her husband, Roger, have put the event together.

Everything from the fundraising day will go to NTSAD to help find a cure. It’s critical for the Toops family to find a cure for their grandchildren, Mollie and Madelyn because they are in the throws of the rare genetic disease, Sandhoff. The future of thousands of others is also at stake since doctors really have no cure or treatment for the extremely rare disorder.

The Toops and Ronaldson families together appreciate any help. They are humbled by the response of people when they hear about the girls and are holding fast to God’s unchanging hand that will lead them through this troubled time with friends uplifting them in prayer.