RS grad starts GoFundMe page to help niece’s latest hurdle in coping with Pompe

10

Tyler Banschbach set up the ever popular GoFundMe page in order to help his niece and her battle with Pompe Disease.

The Rising Sun High School graduate and youngest brother of Kendra (Banschbach) Reeder started the fundraising page just over two weeks ago. The response has been unbelievable. The page had raised nearly $14,000 of the $36,500 goal.

Kendra said her brother has been so motivated and felt there was something more he could do.

Tyler, 26, did all the work researching, getting costs and setting up the page.

“The day we had the storm in November and I had to carry her down the stairs, that’s when I think he felt he had to do more as an uncle. He made this happen.”

The posting of a video on Facebook and plea to get the word out didn’t take long. Another former Shiner (and northern Kentucky resident) Tricia Shelton Day contacted a friend at WLWT Channel 5. They contacted the Reeders at 3:30 p.m. and were there by 4:30 to their home in Hebron, Kentucky.

Kendra, a 2001 graduate of Rising Sun High School, has cleared plenty of hurdles in her life as former a record holder in the 300 meter hurdles. She went on to University of Southern Indiana to major in Occupational Therapy. There she met Jeff Reeder. The two married on May 10, 2008 and on October 26, 2009 they were blessed with their first child, Addylen Sue.

At six months of age, Addy was diagnosed with Pompe Disease, which is an inherited disorder caused by the buildup of glycogen (sugar) in the body. The accumulation of glycogen in certain organs and tissues, especially muscles, impairs their ability to function normally.

Now seven years old, Addy is in need of medical equipment including a generator, platform lift and lift.

“It’s been humbling,” Kendra admitted. “It took a long time to ask for help, especially for financial help.”

Kendra wasn’t sure why Tyler and his girlfriend Brittany decided to do the video.

Tyler explained in his GoFundMe page: “The generator will be used to supply backup power to all of her equipment in the event of a power outage. Years ago, I personally witnessed the terror that unraveled after a power surge tripped the breaker which resulted in power loss to Addylen’s only air supply, her vent.”

Kendra, daughter of Greg and Pam Banschbach, has dealt with power outages but there is a need for a generator. They have a gas generator but it causes fumes.

“We had an incident but I could not recall exactly what my dad told me I had to do. Check the gas, chock,” she frantically remembered before calling her dad. “Oh my gosh, dad! He was right over.”

Tyler found a Generac Guardian 22,000-Watt Standby Generator which costs $4,697 plus tax.

“Everyone knows you go to the basement during bad weather. One time there wasn’t any warning then Jeff (OT at the VA) called and said get to basement,” she said, and now she goes to the basement when they issue a watch.

That’s the reason for a Butler Mobility Inclined Platform Lift with a cost of $24,250 plus $1,500 for any additional construction materials and labor, plus tax.

The Platform Lift will be used to safely transfer Addy to and from the basement.

“This will be so important in not only giving my niece more freedom, but in also giving our family peace of mind during storms,” Tyler posted.

There have been people who had stair chairs which are not feasible. They need a platform. They can’t disconnect the ventilator.

“We have a basement. It’s not fair that I can’t get her down there,” she admits. “The basement is another place for her to explore within her own home.”

With both parents working in Occupational Therapy, Kendra admits “It’s been huge. We’re always trying to do some kind of therapy with her. Stretch her. Exercise. I can’t imagine how people who don’t have a health care background can do this. We had to educate ourselves with some stuff. Being Occupational Therapists, we have people we can reach out to.”

The third item of need is a Hoyer Voyager Portable Easytrack 3 Post System at a cost of $2,565 plus $1,000 for any additional construction materials and labor, plus tax. A manual Hoyer system doesn’t fit in the family’s bathroom and Medicaid wouldn’t cover the cost of the ceiling type.

The family has a van. Kendra’s fellow workers at the rehab at UC had a 5K to help raise funds.

But they can’t go out on their own. Addy always has to have somebody next to her in case something gets disconnected. It can pop off in the back, which Mamaw Pam says isn’t easy to get to. You have to pull over.

Nothing is normal. Shopping is done on Amazon as evident of the packages in the hallway and at the door.

They were told they shouldn’t have pets but Addy enjoys her two dogs, cat and fish. Just another simple thing that makes life closer to normal.

Insurance concerns

The Reeders say they have been fortunate that Addy has been covered under Kentucky’s Medicaid. She receives a six hour enzyme replacement infusion every other Wednesday, which they have been able to do in their home. “It’s been a blessing. Most people have to go to the hospital.”

“Addy has a missing GAA enzyme that gets rid of the glycogen which we burn for energy which she can’t,” Kendra explained. “But it has only been effective for Addy’s heart condition. It doesn’t seem to work the same for every person on it. Addy requires ventilation 24 hours and Medicaid has provided a back up ventilator. With no medicine she wouldn’t be here.”

Some estimates show her medicine (Lumizyme) could cost hundreds of thousands of dollars per year.

“We haven’t had an issue with that so far,” Kendra knocks on wood. However, possible changes in Obamacare brings concern. “That’s a hurdle that we will deal with if the time comes.”

Some kids and adults who are higher functioning and there are some who are worse than Addy. Her heart stable. She has no heart disease but, just as the proud mom said that, she shared an incident that put Addy in the hospital in Evansville on Christmas Day. Her heart was racing and she had to be shocked twice to get her heart beat regular. To make thinks harder, she was transferred by ambulance back to Cincinnati. Jeff went with her while Kendra had to stay behind.

Routine includes school

Addy’s right arm is her most functional. She can’t move her legs around. She needs total support. As part of the daily routine, first thing is to clear her airway because she can’t cough on her own. An IPPV( Intermittent Positive-Pressure Ventilation) machine is used each morning and night to help prevent from her from developing pneumonia.

Kendra explained that Addy plays games on her I-Pad and watches movies. She has a lot of screen time. She loves her Uncle TyTy (he’s a gamer) and her Uncle Sam. She has a ROKU remote and can control the TV.

“If it weren’t for people giving her I-Tune gift cards we’d be bankrupt,” laughs Kendra.

But it’s not just fun and games. She has visits from certified special education teachers twice a week along with speech and occupational/physical therapy. She sees 14 specialists in all.

Addy is part of a first grade class at nearby North Pointe Elementary School. She has Facetime with specialty classes and has had music, art, and now library. She is able to get some interaction with other kids

Marcie (Feiss) Kelly is a teacher at the school. She and her husband Steve are Rising Sun graduates also.

“She’s every much a little girl,” says her daytime nurse Donna. “She loves girlie stuff. I show her clothes in the morning and she picks out what she wants. She loves sparkly stuff.”

Kendra adds that cognitively she’s there. Her voice is restrictive because of the ventilator. If she didn’t have it she’d be talking your ear off. And she knows it’s not grandma, it’s Mamaw.

The family gets inspiration from Megan Cranley who is now a sophomore at Notre Dame. She and her brother have Pompe and a movie on their lives was made entitled Extraordinary Measures. You can see her story at her personal website: https://highheeledwheels.com/

Pam admits, like Lauren Hill, Addy doesn’t ever give up. There needs to be a speaker for Pompe. The family was happy to see Pompe mentioned in the recent congressional address. They are part of several Pompe groups on Facebook.

Addy’s Mamaw and Addy’s Hawhaw (Greg) are taking part in Rising Sun’s Biggest Loser contest trying to win the $500 (each) prize but to say the least things have been stressful.

Kendra has had support from classmates, relatives and amazing friends. They don’t know half the people who have donated to the GoFundMe page. They are thankful of all the support and donations.

That support includes being in contact with Stacey and Sammie (Walton) Lange whose son Nolan is dealing with Spinal Muscular Atrophy, which is a life-threatening genetic disease. Also, Mike and Mindy (Monroe) Smith who son Hunter has a rare facial disorder.

“I think about that and three devastating cases from a small town like Rising Sun.”

All family members have been tested including an amniocentesis before their daughter Jessa was born. She is a carrier just like Kendra and Jeff,

“Don’t take anything for granted,” Kendra advises. “I don’t know what we would do without the (every day) support of mom and dad, Jeff’s parents, our daytime nurse Donna and nighttime Rebecca.”

Today (Thursday) is Kendra’s 34th birthday. There has been no greater gift than the love, prayers and support shown for Addy.

-Tim Hillman