Stories

The Northwest Lions Foundation is dedicated to bringing sound back to the lives of those with hearing loss and restoring sight to the blind. To learn how people’s lives have been changed, read the stories below.

Sight

Sight is one of our most crucial senses. How do you explain “red” to someone who can’t see? What about describing the ceiling of the Sistine Chapel in terms of sight or touch? Without sight, we lose vital contact with the world around us. We lose part of our ability to thrive.

The Northwest Lions Foundation is dedicated to restoring sight to the blind. Whether it’s the work of worldwide cornea transplantation through SightLife or helping a local high school student see to finish school, we’re here to help you serve your community, to turn darkness to sight.

Special Glasses for a Special Girl

Four-year-old with rare disorder gets chance to see normally.

Adyson wasn’t yet 6 weeks old. The doctors had known something was wrong when she was born, but this was completely unexpected. Had Kym and Ron heard correctly? Surely the doctor didn’t mean it.

“I’m sorry, but I think your daughter is blind.”

With an appointment at Portland’s Casey Eye Institute the following month, Adyson’s parents refused to give up. “I just knew in my heart that she wasn’t [blind;] they had to be wrong,” Kym said.

Their first visit to the eye institute proved to be another long day. After his examination, the doctor announced a litany of eye problems for little Adyson: glaucoma, cataracts, retinal hardening…the troubling news went on and on. Genetic testing took another four months to return a fuller report.

Adyson, it turned out, had an unusual problem. Of the more than 6.5 billion people on our planet, only 300 have the genetic syndrome known as W.A.G.R. Baby Adyson was one of those people.

People with W.A.G.R. experience a variety of health problems, and Adyson was no different. Before turning two, the little girl already had part of a kidney removed and was facing 6 months of chemotherapy. In her four short years, Adyson has undergone seven surgeries, including cataract removal.

One common aspect of W.A.G.R. is aniridia, the underdevelopment or lack of an iris in the eye. The iris controls the amount of light the eye receives. When you get your eyes checked, the doctor gives you drops that completely open your iris. You become extremely light-sensitive, which is good for check-ups but bad—sometimes even dangerous—for normal life. That’s why they tell you to wear dark glasses until your eyes recover.

For someone with aniridia, there are no drops to wear off. With no iris, light pours into the eye unchecked, painfully overloading an already damaged system. The solution? Specialized glasses to filter the light. Glasses that cost nearly $500.

Money was tight. The recession hadn’t been kind to Adyson’s family. How could they find the help their little girl needed? Thankfully, the Longview Pioneer Lions were there.

Ruth Morrill, the Club’s Sight Chairperson, contacted the Northwest Lions Foundation to set up a Patient Care Grant. The Foundation uses the pooled resources of the Endowment Fund, operating surplus from SightLife™, and MD19 fundraisers like White Cane Days to double a Club’s support for sight and hearing projects in their community.

The Foundation was more than happy to help. Soon Adyson was on her way to get the new glasses.

Early on, the doctors had told Kym and Ron that Adyson would never show interest in TV, books, or other forms of play. “I am happy to tell you that is all false,” Kym says. “In fact we put her in dance class last year to help get her reflexes back…and she loves it.”

According to Alex Conn, the Foundation’s Lions Program Manager at the time, Adyson “is obviously a fighter, and I see this grant as a very small contribution to her future.”

A future we’re sure will be every bit as bright as Adyson’s smile.

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Cassidy Myers: Cornea Recipient

Cassidy was barely five when she received her cornea, but it had already been more than a year since she began to complain that everything looked “scribbly.” With the scribbly vision came problems with depth perception and maintaining balance.

An ulcer was boring a hole into Cassidy’s eye and taking her sight. As the ulcer festered, the hole grew and scarred over. Without intervention, Cassidy’s eye would go completely blind.

On a February morning in Spokane, Cassidy received the gift that put her young life back on keel. Immediately upon waking up from cornea transplant surgery, she told her parents that everything wasn’t scribbly any more. In the months that followed, her vision continued to improve. “I can see so much better!” she told her parents over and over, but they never failed to be thrilled at the words.

“We will never know the donor or the donor family, but they have given us the most beautiful gift,” says Cassidy’s mother, Dawn. “They have given us the ability to look forward to the future.”

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Cristina Margolis: Cornea Recipient

In May of 2007, Cristina’s right eye was diagnosed with a very rare and serious infection called Acanthamoeba Keratitis. She underwent intense treatment for three months straight, and although the infection was gone, she was left legally blind. It was very difficult for her to adjust from being a normal 25-year-old to a disabled woman with low self esteem because she felt ashamed, embarrassed, and ugly.

In December of 2008 though, Cristina received the chance to see again by having a very successful cornea transplant. She is now able to see 20/30 – better than she had been able to see before! She no longer even needs glasses, something she had worn her entire life. Cristina feels very blessed to have received the gift of sight again and says a special prayer for her donor and her donor’s family every day. Words simply cannot express her appreciation and respect for this wonderful gift.

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Gertrude Matthews: Patient Care Grant – Sight

After 40 years of caring for more than 100 foster children, Gertrude Matthews sat confined in a tiny apartment in Burien, blinded by an accident of 14 years ago, when a playful two-year old accidently kicked her right eye while they were playing on the couch. With the other eye now failing, too, Gertrude felt like a prisoner of circumstance.

Though she had lived in the apartment for a year, the walls were bare – no need for photos or art you can’t see. Confined to a wheelchair as a result of a stroke, she watched TV from just a few feet away but saw only blurs. Reading was out of the question, and she identified visitors by voices rather than faces. When a staff member of the Northwest Lions Foundation brought her flowers, she used a magnifying glass just to see the colors.

That was the picture for Gertrude, and it wasn’t right. At age 84, if anyone deserved help from others, it was this woman who had given of herself for four decades to children who had no one else to turn to. Gertrude kept up her considerable spirit with memories, like the time one of the boys she had raised traveled from California on his 16th birthday to surprise her with a visit. The boy’s re-united father had asked what he wanted for his birthday. His answer? “Take me to Seattle to see Gertrude.”

Clearly, here was a woman who deserved a helping hand. Her first breakthrough came when surgeon Harry Geggel determined that she was a candidate for Keratoprosthesis – a new type of surgery done with an artificial cornea. Gertrude’s eye had been so badly damaged by the kick that two attempts at traditional transplant surgery with donor cornea tissue had failed to take hold. Familiar with our sight mission, Dr. Geggel called the Northwest Lions Foundation to ask for help with the $3,000 cost of the artificial cornea, which was not covered by Medicare. When Dr. Geggel told us about Gertrude, and about his own commitment to perform the surgery for free, our answer was a resounding yes. A Patient Care Grant from the Foundation paid for half of the cost. Five Lions Clubs – Burien, Renton, Kennydale, Fairwood, and Seattle Rainier – teamed up to pay the other half.

The surgery took place in January 2008, and it worked! Gertrude’s vision has improved dramatically and continues to get better. Now instead of identifying people by their voices, she sees their faces. She’s even reading again.

“It’s hard to tell people who haven’t been through it how good it feels to see again,” she says. “I think I’d rather lose any part of my body other than my eyes. I appreciate what the Lions did for me so much!”

It was our privilege to help, Gertrude. May your eyes light up many times in the years ahead at the sight of much-loved familiar faces.

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Judy Jones: Cornea Recipient

Judy Jones might never have seen her own son Legrand’s face if not for two cornea transplants.

Judy was 4½ months pregnant and losing the race against a rapidly-spreading form of Keratoconus when she received her second transplant. “For me, Legrand’s birth was a double miracle,” says Judy. “Holding him would have been enough, but I am more grateful than I will ever be able to express to the donors who made it possible for me to see every perfect, tiny little feature.”

Legrand is not the only child whom Judy appreciates watching grow and change. There are literally hundreds of faces to be thankful for at the south branch of the Puget Sound Boys and Girls Club she directs. “I would still be able to do this job blind,” she says, “but oh, those smiles! I owe the privilege of seeing them to two people I’ll never meet but whose kindness I will never forget.”

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Judith DePaoli: Patient Care Grant – Sight

A working woman all her life, Judith DePaoli was going blind from macular degeneration and cataracts. Without insurance, she couldn’t afford the surgery she needed to keep her job at a Seattle-area restaurant.

Doctors’ estimates for the surgery were all upwards of $13,000, and fundraising efforts of family and friends were well short of that goal. The social agencies the family contacted could offer no help until Judith actually lost her job. Judith’s daughter, Becky, was to the point of despair in her efforts to find help when she contacted the Bothell Lions Club.

“I think we can help,” said Club President Whitey Gann. The small Club did just that by partnering with the Northwest Lions Foundation to pay for most of the surgery through a Patient Care grant. The money that family and friends had raised covered the rest.

Weeks later an estatic Becky e-mailed this news: “Mom can now see the leaves on the plants and the cracks in the sidewalk. She finds them equally beautiful.”

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Cornea Transplant Keeps World Special Olympics Champion in the Game

“The best option for you and your baby is to put her in an institution.”

That’s what a doctor told Julie Bertelsen’s parents 39 years ago when she was born with Downs Syndrome. Allen and Jan Bertelsen ignored that doctor.

Since then all Julie has done to validate her parents’ faith in her future is:

  • Win 135 Special Olympics medals in gymnastics and equestrian events, including a Gold and a Silver in the 2007 World Summer Games in Shanghai, China;
  • Serve on state and local Special Olympics advisory committees and as an ambassador for the games;
  • Work multiple long-term jobs. Julie currently works at the athletic facility for Montana State University and at two local sporting goods stores;
  • Win a large following both within the university and the surrounding community from fans who take inspiration from seeing positivism and spunk exuded on a daily basis.

In fact, it seemed like the whole city was at the airport to greet Julie when she returned home from the 2007 games in China. Every member of the Montana State women’s basketball team was in the crowd, as well as athletes from many of the other university teams, customers of the businesses where Julie works, employers, family, and just plain fans.

How our SightLife Lions eye bank fits in

In 1999 when Julie was 29 years old, the athletic career that has brought her so much joy faced a premature end from impending blindness in her right eye. Cornea tissue from SightLife enabled the sight-restoring transplant that saved her vision and provided continued opportunity to excel in sports.

Last year, SightLife weighed in again for Julie when she faced the most devastating loss of her life. Allen Betelsen, Julie’s father, coach, and lifelong hero, died at the age of 69. As attested by the nearly 800 people at his funeral, Allen Bertelsen had the same gift for friendship as his daughter. After seeing what cornea donation had made possible for Julie, there was never a doubt that he would be a donor. Two people in faraway Japan now see the world through his eyes.

Julie found both comfort and pride in her father’s gift. For this woman who has used parental love and God-given spunk to achieve beyond expectations, the lesson must speak as loud as a Lion’s roar: human kindness is a gift that always comes around.

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Katelyn Shove: SightLife Cornea Recipient

Katelyn’s family wasn’t aware that she had noticed. Nobody knows how it got there, but, besides robbing Katelyn’s vision, the scar on her left eye had opaqued over much of the brown center with a milky white film. But Katelyn HAD noticed. And when a post-surgery look in the mirror told her that both eyes are now the same, the three-year-old from Idaho was one elated little girl.

Katelyn’s family is more than a little pleased, too. “Thanks to you guys, we have a beautiful, happy little girl,” says Katelyn’s grandmother, Arliss Shove. The Northwest Lions Foundation and the Lions Club from Kateyln’s community split the cost of the $8,500 Patient Care Grant that paid hospital and operating room costs associated with the transplant. Dr. Tueng Shen of the University of Washington donated her time and skill to do the surgery.

As you might guess, cornea transplant surgery for someone so young as Katelyn is unusual. Of the 2,495 corneas SightLife provided for sight-restoring transplants that year, only one or two were for very young children.

Cornea transplants for young children don’t come with the same 90-percent-plus guarantee of restored sight as for adults, but early indications for Katelyn are promising. She has already experienced some restored vision in the eye and enjoys the support of a close-knit family.

“Katelyn and her family deserve our very best, and we’ll be following her progress closely,” said SightLife Chief Operations Officer Bernie Iliakis. “It is a privilege to be in a position to help a special girl like this.”

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Micki Gould: SightLife Cornea Recipient

At first, Micki Gould just thought she needed reading glasses. But as her vision got progressively worse, the 49-year-old operating room veteran knew she was in real trouble.

In the operating room, a loss of depth perception made it impossible for her to locate and secure the fine sutures used in open heart surgeries. After 28 years as a nurse with “go to” skills, she would soon be useless in the operating room. She could continue in her other capacity as a clinical nurse educator at St. Joseph’s Hospital in Bellingham, but for how long?

Even worse, fear became her frequent companion as self-sufficiency slipped away in what seemed like a thousand ways. Perhaps the last straw came when she panicked upon being separated from her husband during a trip to the shopping mall. She knew she was at the mall, but where in the mall? And how would she find her husband without being able to recognize his face from any sort of distance? Micki felt helpless and alone.

A visit to eye surgeon Dr. Thomas Gillette in Seattle revealed the problem. Complications from radial keratoplasty performed on her eyes 15 years prior were taking her vision. On November 22 of last year, Micki underwent the corneal transplant on her right eye that put her life back in order.

After years of assisting surgeons with tissue and organ recoveries that renewed hope and normal life for others, Micki Gould has found herself on the recipient side. And it feels great!

“I have to admit to some fear going into the surgery,” says Micki, “but the recovery and progress has been incredibly positive!”

By the time you read this story, she will have returned to Dr. Gillette for an assessment on whether her left eye also needs transplant surgery. Odds are high that the answer will be “yes,” because she has experienced a definite loss of vision in that eye as well.

This time she’s looking forward to the surgery. As a second timer, her attitude has evolved from fear to anticipation. “The sooner it’s done, the sooner my sight returns,” says Micki.

There’s one thing, however, that she will never take for granted. As one who has personally experienced the real-life drama of organ/tissue donation from both sides now – recovery and recipient – Micki Gould goes forward with a profound respect for the kindness of donors and for organizations like SightLife, who serve as caretakers of their gift.

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Yelena Davidenko: Patient Care Grant – Sight

Those are the words of Russian-born teenager Yelena Davidenko, who lost her sight as the result of a tumor. Since receiving the Gateway computer with talking software as a Patient Care Program gift from the Everett Lions Club and the Northwest Lions Foundation, the 18-year-old has rushed through those newly-opened doors at a speed that has amazed her teachers at Cascade High in Everett.

“When I first met her, Yelena was very sad and downcast and believed that blind people could do nothing,” says teacher and mentor Denise Mehlenbacher. “She had been out of school for five years. Then, with the help of talking software, she discovered the great advantage of computers, which she had never touched before. When I saw that spark grow in her, I knew she needed a computer to keep her alive through the summer months of no school. I told her I was contacting the Lions for help. She didn’t understand at first, and as I explained the concept, she grew so excited and told me, ‘I had no idea there were such people who did things like that!’”

Since I got my computer, I feel like I received half of my vision back. It gave me wings and opened doors that I had no idea were there.

With the help of the computer, Yelena flew through her education with a 3.8 grade point average and a gift for math. She knows what she wants to do with her life: “Looking at what the Lions have done, I want to do the same,” says Yelena. “I want to help people; want to make them happy; I want to make a difference in somebody’s life.

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Hearing

“Deafness still remains isolating – even more so than blindness. When you’re blind, you lose touch with things, but when you’re deaf, you lose touch with people.” — Helen Keller

Hearing loss affects more people in the United States than heart disease, cancer, tuberculosis, venereal disease, and kidney disease combined. One of every 10 people is affected to some degree. Social implications of losing hearing are disasterous with many people drawing themselves into isolation rather than face the growing difficulties of life without hearing and the stigmas it often leaves.

The Northwest Lions Foundation is dedicated to bringing the joy of sound back to those with hearing loss. From helping rural children with vital equipment for their education to providing hearing aids to urban grandparents, we’re hear to help you serve your community, your friends, and your families.

Blaine Frisbie: New AUDIENT Hearing Aids

Four-year old Blaine Frisbie of small-town Montana heard himself laugh for the first time when he was fit with his new hearing aids earlier this year. His eyes lit up at the sound, and his mother, Val, and audiologist Tina Berg Fields both found themselves weeping with joy at the sight of a new world opening up for young Blaine.

“It was so incredible!” says Val Frisbie looking back on that day. She remembers Blaine biting into a potato chip after the fitting and looking up to tell her, “These are weally crunchy!” That evening her husband, Tim – who had initially struggled with the idea of putting hearing aids in someone so young – also became a believer. “Once Tim saw the difference he was amazed,” says Val. She remembers how tired Blaine was that night as he went to bed with his head filled with new sounds and new knowledge.

She reports that, with the help of speech therapy, Blaine has been progressing rapidly ever since in his ability to pronounce words clearly. Sister Tailor (14) and brother Brock (9) have enjoyed Blaine’s increased ability to talk with and support his efforts at continued improvement daily. In fact, it is Tailor who helps Blaine put his aids in each morning. For his part, Blaine is quite responsible about wearing them and quick to report when he needs new batteries.

“The Lions who have helped us need to know what a wonderful difference these aids have made for our whole family,” says Val. Blaine was born with substantial hearing loss. An early misdiagnosis gave the Frisbies false hope that the loss could be reversed, but tubes to drain excess fluid and other intervention measures failed to make a difference. When it became apparent that hearing aids were necessary, cost still remained an obstacle.

Both parents work – Val teaches special education at the local school district, and Tim works at a local factory – but the $5,000+ price tag for the high-quality aids that Blaine needed still posed substantial hardship. Fortunately, area audiologist Tina Berg Fields is a partner in the AUDIENT hearing care provider network. This network that makes aids available to income-qualified families at steeply-discounted prices made it possible for Tina to provide Blaine with two high-quality Siemans aids with special kid-gear pack for $1,560. Then the news got even better for the Frisbies. To help this young, local, and deserving family, the Montana Lions Foundation for Sight & Hearing agreed to pay $1,210 of the cost. Our Foundation’s own Patient Care Program kicked in the last $350. Total out-of-pocket cost to the Frisbies? $0.

“We are so very thankful for all that the Lions Foundation did for Blaine,” says Val. “Because of you, he was given the chance to grow and learn.”

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Denver Gordon: Hearing Aid Program Recipient

What if you couldn’t hear to do your work? How about to play with your children? What if you lived where you had no hope of receiving help? What if an audiology student in America found out about your plight?

That’s exactly what happened for C. Denver Gordon of Belize. Thanks to the sister of a PhD Audiology student at the University of Washington, Denver received the hearing aids he desperately needed.

I am so thankful I don’t think the word thanks is just enough to say how much I am thankful for everything I have received. I am so please and happy to have back my hearing in this way. Now I can have fun once more with my young Niece and Nephew, co workers and everybody and everything around me… I must ask you to thank your sister… and the Lions Club.

Thanks again to all of you and the interest you all took from the first email up until I received everything. Thanks a million. Your new friend, I’ll always remember you all. – C. Denver Gorden

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Erma Swift: Hearing Aid Program Recipient

For Erma, the face of compassion is Carolyn Harestad, owner of two private speech and hearing centers and part of the Federal Way Noon Lions Club. Upon learning of Erma’s trouble, Carolyn freely donated many of her own services and asked her Club to sponsor Erma through the Hearing Aid Program. They partnered with the Northwest Lions Foundation to share costs of recalibrating and recasing two high-powered aids to fit Erma’s exact needs.

In Erma’s case, the improvement in the quality of her life can’t be measured in dollars. “Without the aids it felt like I was in a tunnel,” she says. “Now not only am I able to talk with people again, but these are the nicest aids I’ve ever had. I can’t thank the Lions enough!”

I live on social security, and when my old hearing aids wore out, I could never have afforded to replace them. When I look at the prices of hearing aids, I tell myself, ‘Thank God for people like the Lions.” – Erma Swift

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Sawyer & Tess Griffin: New Hearing Aids

Hearing loss isn’t hereditary. As parents of a hard-of-hearing child, Christine Griffin and husband Steve knew this. That’s why neither could believe their ears when doctors told them that Tess had followed in her brother’s footsteps by being born with significant hearing loss. The odds against this happening are astronomical.

The odds that caring people would step forward to help through a Patient Care Grant partnership between the Foundation and the Bellingham Central Lions Club? Much, much better. More than $4,600 of help later, the Griffin family and the Lions have developed a mutual admiration society.

Fred June of Bellingham Central can’t think of a single higher use for his Club’s half of the cost than to invest it in a family like the Griffins. “This is a single-income family with all the same expenses that the rest of us have, plus the cost of all this extra care for the kids. They deserve all the help we can give them.”

Says Christine, “I was surprised when I found out the Lions could help us. Also relieved because our insurance through Steve’s work doesn’t cover hearing aids. Your help changed Sawyer and Tess’s lives. We are so indebted to your cause.”

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Sean Fetters: Bone-Anchored Hearing Appliance & Ear Prosthesis

When you’re born missing an outer ear, you learn early to ignore the stares of curious strangers. But hearing at only 30 percent of normal from his right side was a problem that Sean Fetters of Spokane, WA, couldn’t ignore – not when it interfered with his ability to perform at maximum efficiency in his job as an intensive care unit nurse.

Through a Patient Care Grant partnership between the Foundation and the Spokane Central Lions Club, that problem is now history for Sean. He became the second BAHA (bone-anchored hearing appliance) recipient ever at the University of Washington Medical Center. In an expensive procedure, doctors implanted a titanium post in the mastoid bone above Sean’s ear. A processor snaps onto the post to catch the sound vibrations that are conducted through the bone and send them to the inner ear. A “click on” silicone prosthetic ear that Sean will receive soon will add the cosmetic finishing touch.

The ability to hear clearly when multiple situations are occurring all around him in intensive care will make Sean an even better nurse. Socializing at the church where he and his wife are active will be easier, as will keeping tabs on their young son.

“With background noise present, I really was deaf in my right ear,” said Sean. “I can’t thank the Lions enough for making my life better in so many ways.”

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You can make a difference

Chances are, you know someone with hearing or vision loss. If you do, you know the difficulties they face every day.

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