Child with Brain Injury Due to Shattered Skull will Travel to China for Stem Cells
By Lou Ann Good, Lancaster Farming, April 28, 2007
Tom and Mandy say that, “Jonny understands everything that is going on, but it’s like he is locked inside.”
The parents of six-year-old Jonny will travel to China to take advantage of the medical alternative of adult stem cells to help their needy son. The treatment is not available in the United States.
“When Jonny was three years old, he was always helping his dad on the farm,” Mandy said.
The barn became home to Jonny and a playground for his toy tractors and trucks. Jonny would climb across the tie stalls as if they were monkey bars while Mandy and her husband would milk their Jersey cows.
Three years ago, only two miles from their home, a driver who was high on drugs slammed into the family van. After the accident that occurred on Christmas week, Jonny was a different person. He was no longer the child everyone had come to know. Today, he can’t hold his head up by himself, let alone talk or walk.
Jonny’s skull was shattered that day when the van rolled over several times. He suffered severe brain damage. It was a miracle he even lived through the crash. Afterwards, he went through rehabilitation and hospital care for many months.
To this day, Tom and Mandy have not surrendered their son to his condition. They spent three years putting Jonny through daily care, countless therapies, and even added a babysitter to the family to keep constant watch over him. They believe that walking and talking are still within reach for their son.
“We always say, ‘When Jonny gets better, not if Jonny gets better,’” Mandy said of the family that includes Caroline, 5; Alex, 3; and Nichole, 2.
The family researched every treatment that could potentially help Jonny. They were determined to give him every possible chance to get better.
Studies continue to produce more therapies every day for children with brain damage, and one of the potential therapies involves stem cells. And so, Jonny has been given the opportunity to receive stem cell therapy in China.
Mothers who give birth to healthy full-term babies have the opportunity of donating their umbilical cords for banking. Mandy explained that the stem cells would be harvested from the blood contained within these cords. About 300,000 stem cells can be extracted from one umbilical cord, but this is not enough to perform a transplant. The stem cells are separated from all the blood products and then expanded. The latter process multiplies the cells to the point where there are enough to provide therapeutic benefit. This is typically far into the millions.
Following expansion, the stem cells are turned into white matter by mixing them with select chemicals.
The family is quick to point out that they are using stem cells from umbilical cord blood and not controversial embryos. The ethical nature of the treatment was an important factor for them.
Jonny cannot get the treatment in the United States, even though the FDA permits stem cell research to treat more than 80 conditions and illnesses.
Mandy was able to contact six American families who traveled to China for cord blood stem cell treatment. All of them reported positive results.
“It is not a miracle cure. But it is a treatment that shows promise in helping Jonny regain some mobility skills,” Mandy said. “His birthday July 30 has been a sad day for the family for the past three years. It marks another year Jonny missed doing the things he loved on the farm. At the same time, we are grateful we still have Jonny. So many medical breakthroughs are coming down the line. As long as we have Jonny, we still have opportunities. We want to do everything we can.”
Jonny, Mandy, and a nurse must remain in China from May 30th to July 3rd in order to complete the treatment.
Tom will have to stay at home to take care of the farm and Jonny’s siblings. The family’s 140 acre farm is home to some of the most prized dairy cows in the country, with 97 percent of them being homebred and many being graded as “excellent”.
Mandy helped milk the cows every morning before the accident, but that became impossible afterwards since Jonny required constant care. In order to help with Jonny and the other kids, a minimum of two adults need to be inside the house at all times.
Three days a week, Jonny is home schooled. His responses are scanned by a special machine that shows he can read a few words. A nurse is present in the house for eight hours every day of the week as well.
In addition to dairy farming, the family also has a cheese making business which they started a few weeks prior to the accident. Mandy’s mother and stepfather moved to the farm from Massachusetts to help with this aspect of the farm. They use the raw milk from the Jersey cows to make Colby, cheddar, and many other varieties which are all sold at local grocers and four other markets in the Philadelphia area. The cheese can also be bought through the website, www.hillacrespride.com.
Tom’s parents also live on the farm and help with all the daily activities surrounding the business and children.
Mandy says that she becomes overwhelmed when she thinks about the big picture, even though the daily tasks that surround her provide somewhat of an escape.
“So much time is spent on Jonny, but the positive side is that the other children have so many people in their lives who love them and who they would never have met otherwise. We try to look at things in a positive manner,” Mandy said.
Tom is also a Jersey dairy judge and will judge at the National Junior Jersey Show at Madison, Wisconsin this year. “More and more we are trying to get back to a normal life,” Tom said.
“Jonny is priority number one. I have learned to make time for Jonny. Some things that used to be so important are no longer important,” despite so many timely pressures connected with dairy farming, Tom said.
The family tries to keep busy. Insurance does not cover the expensive stem cell therapy, or any of the other alternative treatments they tried.
The surrounding community is coming together to help pay of the $35,000 treatment. A fundraiser will take place on May 5th, with auctions and a pig roast planned. T-shirts will also be sold that read: “Jonny’s team. A pinpoint of hope bursting into a world of possibilities.”
Many other community events will take place in addition to the fundraiser in early May. All the money raised will be donated and go towards Jonny’s stem cell treatment in China.