10-year-old with Ehlers-Danlos syndrome Joins UWGB’s Softball Team

10-year-old Ellen joins the University of Wisconsin’s softball team as an honorary member. Now, this young EDSer can experience the camaraderie of team sports – without the physical risk.

By Korey Mallien.

Ellen_2

(Photo: Tina M. Gohr/Door County Advocate)

“The chronic pain and fatigue that 10-year-old Ellen Tellstrom deals with every day subsided this week when she met her new college softball teammates.

“It was amazing,” said her mother, Kathy. “She had such a good time. I don’t think I’ve seen her smile or have that much energy in a long, long time. My heart was just so full of excitement for her.”

The UWGB’s softball team is forming a special relationship with Ellen, a Sturgeon Bay fourth-grader who’s dealing with Ehlers-Danlos syndrome, through a nationwide program called Team IMPACT.

Ellen and her family met the Phoenix players and coaches Wednesday in Green Bay following their first practice of the season. She then signed an honorary National Letter of Intent, just like scholarship athletes do when they commit to a school, during a special ceremony on campus Friday evening.

Ellen and her teammates played games, took pictures and got to know each other during her initial visit. The team marked Ellen’s signing day with flowers and balloons, presented her with a UWGB softball jersey, and celebrated the occasion with a pizza party.

Ellen described the experience as “very fun.” She said it was more than she ever imagined.

“There was like an instant connection with Ellen and the girls,” said Kathy. “The girls just reached in and pulled out my Ellen — the Ellen we haven’t seen in a long time. She was playful and happy and smiling and giggling. The girls were so excited and so willing to be around her, I just wanted to cry. It was pretty magical.”

Ellen isn’t going to actually play for the Phoenix, of course, but she’ll spend time with the team by attending practices, games and other events whenever possible. Phoenix coach Beth Spoehr said she’d like to give Ellen her own locker at the team’s facility and make her the team’s bat girl.

“I think that would be a great experience for her to see the girls in that kind of environment,” said Spoehr. “I hope by doing this it lets her forget some of the issues she has to deal with from day to day and gives her something to look forward to.

“I know she struggles being involved with sports, so this is a way where she can feel like part of a team. I feel it’s important for young girls to be part of a group. We’re very excited to have Ellen with us. I’m hoping she has a lot of fun when she’s with our team.”‘

A ‘nasty’ disease

Ellen, the youngest of Jim and Kathy Tellstrom’s six children, has had chronic health issues “from the moment she was born,” said her mother.

“Her lungs collapsed at birth,” said Kathy. “And when she was 24 months old she was being treated for intestinal problems. She wasn’t sleeping through the night, had pain in her stomach and had trouble going to the bathroom.”

Those symptoms were hauntingly familiar to the Tellstroms — their 16-year-old son Steven also had experienced them as a toddler and has been coping with them ever since. Ellen and her brother have been examined and treated by numerous doctors for their health issues and were finally diagnosed last year with Ehlers-Danlos syndrome.

According to the Mayo Clinic’s online description, “Ehlers-Danlos syndrome is a group of inherited disorders that affect connective tissues — primarily skin, joints and blood vessel walls. A more severe form of the disorder, called vascular Ehlers-Danlos syndrome, can cause the walls of blood vessels, intestines or uterus to rupture.”

Ellen and Steven have a four-day visit with a specialist next month for further testing, said Kathy. Ellen, who said she feels “really tired” and her “stomach hurts a lot,” is also scheduled to have a surgical procedure in March.

The siblings have been greatly impacted by Ehlers-Danlos syndrome, with both Ellen and Steven regularly missing school because of stomach pain and fatigue. Kathy estimates that Ellen has attended school for about 20 days, sometimes for just a few hours at a time, since last February.

“This disease is nasty and it’s stolen their childhood,” said Kathy. “And that makes me angry. Kids should be having play dates, socializing with their friends in school, going out bike riding and having fun. It’s just frustrating and seems unfair.”

There are some treatments for Ehlers-Danlos syndrome, such as physical therapy and pain medication, but there is no cure, according to the Mayo Clinic. So at the current time, all Ellen and Steven can do is simply cope as best they can with the disease.

“It affects people differently and some can live with it, but my kids, with their intestinal issues, it’s blurred,” said Kathy. “There’s a big question mark ahead for them and I don’t know where it’s going to go. I wish there was a magic button that we could push and everybody would get better.”

Something to smile about

Unlike a lot of kids her age, Ellen has never had much of an opportunity to participate in sports or experience the camaraderie of being part of a team. Most of the time, she simply doesn’t have enough energy to play.

“She used to play soccer, and she really enjoyed biking and playing outside,” said Kathy. “But her legs hurt all the time and (doctors) don’t want her running because, with her condition, it affects the muscles in her legs.”

Continually looking for ways to help her children, Kathy joined an online support group where she ultimately learned about Team IMPACT through a woman in Ohio.

Team IMPACT matches children who have chronic or life-threatening illnesses with college teams in an effort to build a support network and improve their quality of life. IMPACT stands for inspire, motivate and play against challenges together.

Kathy said the program seemed like an especially good idea for Ellen, so she applied to Team IMPACT in the fall. The Tellstroms learned Jan. 5 that Ellen would be joining UWGB’s softball team.

“I was ecstatic when they called and said we have a team for you on the Green Bay campus,” said Kathy. “I feel so inspired and so thrilled to have this support for Ellen and our family. If I can get that smile back on her face I’m going to go to the ends of the Earth to do it.”

UWGB joined Team IMPACT this school year, with softball players Ashley Baker and Alyssa Johnson spearheading the effort as a way to give back to the community.

“Being a Division I athlete is a blessing and there’s more to it than playing softball and going to school,” said Baker. “Ellen is going to be our little sister. I think she can teach us more about life than we can ever give her. She’s going through all of these struggles that really puts things in perspective.”

Kathy said UWGB players have offered to take Ellen to future doctor’s appointments or just hang out with her daughter whenever they’re available. Kathy said the connection between Ellen and the players is expected to go beyond this year.

In preparation for her visit with the team, Ellen had her hair styled and her fingernails manicured at Invidia Salon in Sturgeon Bay. Kathy said the players welcomed her daughter “with open arms.”

“It was awesome meeting her,” said Baker. “Just being able to make her happy and put a smile on her face, even if it was for just a moment, was well worth it. That’s all we really want to do when we’re with her from here on out. That’s our purpose. To give her some enjoyment in her life.”

The nationwide program Team IMPACT matches children who have chronic or life-threatening illnesses with college teams. Team IMPACT has helped Ellen gain recognition for Ehlers-Danlos Syndrome and link to a group of supportive team members. 

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