Support for those with Lou Gehrig’s Disease soars to new heights

ALS glenn cindy hill and tim hill embrace after jump

Cindy Hill and husband Tim Hill embrace after Mr. Hill’s skydive jump in support of the Ten Mile Miracle, a non-profit he founded to assist patients with amyotrophic lateral sclerosis – a disease he was diagnosed with 18 months ago.

LAUREL – Last November, it was a 10-mile miracle walk.

On Saturday, Oct. 10,  it was a 13,500-foot leap of faith.

Long Neck resident Tim Hill, diagnosed with Lou Gehrig’s Disease 18 months ago, jumped from a plane high above the Laurel Airport in a skydiving adventure geared to raise awareness and financial support for people with amyotrophic lateral sclerosis – a progressive neurodegenerative disease for which there is no cure.

With tandem assistance from experienced Skydive Delmarva personnel, Mr. Hill and two others – Selbyville residents Megan and Kevin Lundergan, whose father succumbed to ALS – all landed safely on the mark.

“It was such a rush,” said Mr. Hill. “You feel totally comfortable because your tandem partner is strapped tight to you. You scoot over to the door, you throw your legs out and you just go.”

ALS tim and andy bean 2

Tim Hill, left, receives last-minute prepping from Skydive Delmarva tandem partner Andy Bean.

On the ground, wife Cindy Hill – among the many on hand in support – greeted her husband of 36 years with open arms and a tearful long-lasting hug.

“When he landed and I got my arms around him, it was very emotional. It shook me; the whole reason why we are doing this. Tim was diagnosed 18 months ago and we were told to go home and get our affairs in order. It was progressing quickly,” said Ms. Hill, adding that by July 2014 “he was walking with a cane, unable to do steps … just really deteriorating.”

With intense physical therapy, special nutrition and tender-loving care at home, Mr. Hill was able to walk his oldest daughter, Elizabeth, now 29, down the aisle on her wedding day.

Then in November of 2014, he walked 10 miles along Coastal Highway, from Dewey Beach to Bethany Beach, coined the 10-mile miracle.

“That was a miracle because before he couldn’t walk two blocks,” said Ms. Hill.

Mr. Hill is the founder of Ten Mile Miracle, a fully accredited non-profit 501 (c) 3 organization that raises awareness and financial support for people stricken with ALS in the region.

“All of the costs, every penny of fundraising cost is covered privately, so 100 percent of all proceeds go directly to patients,” said Mr. Hill. “I have ALS. That’s why I have been doing these fundraisers for the patients at the clinic at PRMC (Peninsula Regional Medical Center). It has not been easy. So many others get sick so fast they are not able to do these types of things that I am doing for them.”

“Here is the thing that is just so scary; even if you have a lot of money what you have will be depleted quickly because a lot of this is not covered,” said Ms. Hill. “There are people at our clinic that needed a ramp built, or bathroom done, showers, batteries for their wheelchair. It will get you down financially. If the clinic can’t get funding … they will contact us. We have turned no one down.”

ALS tim megan kevin leg up

In preparation for their skydiving jump, Tim Hill, left, offers last-minute advice to Megan Lundergan and Kevin Lundergan, whose father passed away from Lou Gehrig’s Disease in March.

It was a special experience for Megan Lundergan and Kevin Lundergan, who lost their father Jack to ALS this past March.

“It was so crazy,” said Megan Lundergan. “I was happy to do it, for my dad. We saw like a rainbow; I kind of felt it was my dad.”

“It was a lot of fun. I definitely would do it again. It blew me away,” said Kevin Lundergan.

“We have a run every year in May for my dad, this year will be third annual,” Megan Lundergan said. “So we raise money for the (ALS) clinic as well with that run. We’ll come support him (Mr. Hill) no matter what. We always come and support him and do the best that we can.”

Mr. Hill will forever remember what he says is his one and only skydive.

“I’m not doing this again, but I loved it. I didn’t have any sense that the parachute wouldn’t open. It was just no fear at all. It was such a surreal feeling, the rushing of the air past you. The clouds, I think they said were about 3,000 feet so we were 10,000 feet above the clouds,” said Mr. Hill. “When the parachute opened, it’s a pretty good jolt. I actually felt more comfortable during the freefall. I have some limitations … things cramping up and things like that, but you just kind of go with it.”

ALS tim's parachute

Tim Hill, in tandem with Skydive Delmarva skydiver Andy Bean, floats toward the landing spot.

In a second jump, three others completed this special skydiving adventure: Mr. Hill’s good friend Mario Aguillon of Dagsboro; Wilgus Associates co-worker Steve Bernard and Russell Small, whose wife Kim also works at Wilgus in Bethany Beach where Mr. Hill is vice-president.

It was the first skydiving experience for all six.

“That is what we wanted: everybody equally terrified,” said Mr. Hill.

“I have been supporting him and all of his things,” said Mr. Aguillon.

“This was on my bucket list. I’ve looked forward to doing this for a long time,” said Mr. Small, a last-day replacement. “It just happened that yesterday she (Kim) became aware of it, and I jumped on it – literally.”

Dreaded diagnosis

Mr. Hill’s health problems started with falls.

“I started falling, badly, mainly on steps. My foot would catch and I had no idea why. Then I started to get bad cramps. It starts in your legs. It goes up into your hands. My fingers would start to curl up and I couldn’t control it. It is extremely painful,” he said. “Then it goes all over your body; your body just starts not doing what your brain tells it to do. There is a cutoff of the signal from the brain to the body and the body starts acting odd.”

For the better part of two years, there was no definite diagnosis.

“In my case it was 18 months to two years of going through tests and different things to figure out what it was. That’s the typical time frame,” he said.

In the end, it wasn’t Lyme disease or Parkinson’s, but ALS.

“ALS is the disease you don’t want to get. It is completely shocking when you hear it. Really, you kind of give up because you’re told there is no hope,” said Mr. Hill. “When I was diagnosed I got sick very quickly and was only able to walk a block or two. You are given no hope whatsoever when you are diagnosed – zero – of it getting better.”

The average survival time is three years.

ALS crowd watchin

Family, friends and co-workers eye cloudy skies Saturday during the skydiving jump by Long Neck resident Tim Hill, who is battling Lou Gehrig’s Disease, and Selbyville residents Megan and Kevin Lundergan, whose father succumbed to amyotrophic lateral sclerosis.

Keeping the faith

In early September 2014, Mr. Hill began physical therapy at the Mears Clinic which is part of Nanticoke Memorial Hospital, Ms. Hill said.

“Just prior to that we found out about the ALS clinic at PRMC (Peninsula Regional Medical Center),” she said. “I went. That was the first step of, ‘We don’t have to die from this … today. We don’t have to die today.’”

“They told us about Mears. We had our appointment where it is an all-day thing. They do all of the tests. When we left there we felt that it was not the end of the world. They didn’t necessarily say that you’re not going to succumb to this, but it was some hope. Once he started the physical therapy he started getting better,” said Ms. Hill.

“I just saw a little glimpse of light of hope that I started to feel a little better. And I thought, ‘Well, if I can get a little better, I can get a lot better,’” Mr. Hill said. “I did physical therapy and started doing things and I started to get better. I realized that maybe there was a chance. So I was able to work my way up to November of last year to walk 10 miles.”

“Our oldest daughter got married in September (2014). We didn’t think he would walk her down the aisle; but he did. The youngest daughter, Mary, is getting married in November. He will be walking her down the aisle,” said Ms. Hill.

“I had a shop in Bethany and we decided to close that. I decided: knowledge is power. So I made this my fulltime job, to find out about nutrition and supplements. I met with the physical therapists and I found out about exercises I could do with him at home,” Ms. Hill said. “We got him a massage table and got him some oil. He gets a warm coconut oil massage every day.”

“Our faith is unshakeable. I can with all honesty say if it all changed tomorrow we will be OK,” said Ms. Hill. “Tim could tomorrow succumb to all of this, but if that were to happen … we know we will be OK. Our faith has been huge.”

One day at a time

For the Hill family, every day of life is a blessing.

“We’ve been married for 36 years and this whole experience has brought about a whole different side. I always knew he was strong and faithful and compassionate, but this has become a calling for him and for both of us,” said Ms. Hill. “I take care of him at home. I’m his cheerleader. I do all of that so he can go out and help. What everybody doesn’t see but I see every day is he’s fighting every day to walk, to hold a pencil and to keep moving. You wouldn’t know it. He never complains.”

ALS has not stopped Mr. Hill from his work at Wilgus Associates.

“I’ve been able to work every day,” said Mr. Hill. “I have issues. I’m not cured, but I am well.”

“He’s fighting every day at home to be able to go out and do this. He works,” said Ms. Hill. “We feel it’s a calling. We’ve decided it’s a very beautiful journey we are on.

He hadn’t seen his brother (who lives in Texas) in 20 years. He’s here. He has been here every month for the past six months …”

What’s next?

So the question is: What’s next?

“Next year he says he’s diving with sharks, like in a cage,” said Ms. Hill.

“We’re going to do something to top it,” Mr. Hill said. “We’ve got some crazy ideas we might try.”

News Editor Glenn Rolfe can be reached at grolfe@newszap.com.

You are encouraged to leave relevant comments but engaging in personal attacks, threats, online bullying or commercial spam will not be allowed. All comments should remain within the bounds of fair play and civility. (You can disagree with others courteously, without being disagreeable.) Feel free to express yourself but keep an open mind toward finding value in what others say. To report abuse or spam, click the X in the upper right corner of the comment box.