Nothing tells the story of the Ronald McDonald House like the experiences of our families. Each is uniquely compelling, but all are united by a common thread of courage, hope and love. Read some of the stories that inspire us every day.

PANDAS Families

Another Kind of Panda

It may sound cute, but it’s not. PANDAS. For most, the word inspires images of endless Facebook videos featuring cuddly, fun-loving, black-and-white bears. For Penny and Robert, parents of Alexis, their definition is much longer…and much scarier. Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. P. A. N. D. A. S. As Penny describes it, […]

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A Place to
Be A Family

Another Kind of Panda

It may sound cute, but it’s not. PANDAS. For most, the word inspires images of endless Facebook videos featuring cuddly, fun-loving, black-and-white bears. For Penny and Robert, parents of Alexis, their definition is much longer…and much scarier.

Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections.

P. A. N. D. A. S.

As Penny describes it, “PANDAS happens suddenly. We remember the exact moment everything changed. At 9:29pm on Friday, January 31, 2014, Alexis was a normal, six year-old girl. At 9:30pm, she wasn’t.”

Alexis started telling her parents everything she was doing. Everything. “I’m touching my cup. I’m moving it to the table. Now I’m standing up.” Something was wrong.

What Penny could only describe as a sudden onset of obsessive-compulsive disorder soon turned into aggressive hallucinations and never-before-seen violence. Alexis’s immune system had turned on her and was attacking her brain.

After almost two years of doctors without answers and nothing more than antibiotics for treatment (which helped to some degree), Penny found out about a new clinic opening in Tucson, Arizona. Part of the Banner – Diamond Children’s Multispecialty Clinic, this new center of excellence would offer experts in the field of pediatric postinfectious autoimmune disorders as well as integrated care.

In other words, hope.

“I was so excited that there might be hope and answers,” said Penny. “We finally had a direction”.

And so they began their 900-mile trip to Tucson, where they would spend a week at the Ronald McDonald House. “The clinic referred us to the Ronald McDonald House, but at first we thought it was only for kids with life-threatening diseases,” worried Penny.

The truth is that RMHC cares for children with any illness or condition that requires medical treatment. There are 28 bedrooms and always a room open for the next family that needs it.

While at the House, they met another family with a young boy, Enzo, who would be attending the clinic for PANDAS as well. The families connected; they shared. They widened their rather small community of friends who truly understood what they were going through. This type of interaction is very common at the Ronald McDonald House – families healing through shared experiences.

While Penny felt cared for and supported, her daughter summed it up best on their ride back home:

“I don’t feel so alone now.”

In times of greatest need, the Ronald McDonald House will always be here for families. Due to the generous support of the Southern Arizona community, families stay for free and are offered a quiet, private, and comfortable room as well as volunteer-cooked meals, transportation to all local hospitals, and perhaps most importantly, TLC for every person who steps through our doors.

For more information about the Tucson PANDAS clinic, visit http://peds.arizona.edu/steele/cpae.

Matt Mayowa & Iremide

A Little Boy. A Great Big Thank You.

Matt Kehrein and his wife, Mayowa Agbaje-Williams, received joyful news earlier this year – their dream of adopting a baby was coming true.  Maybe the baby was excited to meet them too and decided to show up 10 weeks early, weighing about 3.5 pounds. Matt and Mayowa drove from Gilbert to meet their baby and […]

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A Place to
Be A Family

A Little Boy. A Great Big Thank You.

Matt Kehrein and his wife, Mayowa Agbaje-Williams, received joyful news earlier this year – their dream of adopting a baby was coming true.  Maybe the baby was excited to meet them too and decided to show up 10 weeks early, weighing about 3.5 pounds.

Matt and Mayowa drove from Gilbert to meet their baby and named him Iremide, which means “our goodness has come” in Yoruba, one of the native languages of Nigeria, Mayowa’s original home.

While getting to know their tiny son, they also learned about the Ronald McDonald House. Like most preemies, Iremide needed time in a Neonatal Intensive Care Unit (NICU) for his lungs to fully develop and to grow a little.  And while he did that, mom and dad stayed either near his side or at the Ronald McDonald House.

Their thanks for “our” House should go to all of our donors and friends.

“The Ronald McDonald House serves as a wonderful reminder of the beginning of this journey as we grow our family.  We will not forget for years to come, the role you have played in providing us housing, friendship and support over the past seven weeks.”

Mom, Dad and the now-five-pound Iremide were home in Gilbert for the holidays!

Galia

1 in (26) million

Finding the right gift for Father’s Day can be difficult. A lot of dads never seem to ask for anything, and the “no tie” rule has been in for a few years now. What happens, though, when the one thing your dad wants is unavailable on Amazon, or in the Apple Store, or even in […]

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A Place to
Be A Family

1 in (26) million

Finding the right gift for Father’s Day can be difficult. A lot of dads never seem to ask for anything, and the “no tie” rule has been in for a few years now. What happens, though, when the one thing your dad wants is unavailable on Amazon, or in the Apple Store, or even in the United States? What happens when the only thing he needs is a fully matched bone marrow transplant donor for his eight-year-old daughter?

One family is about to find out.

Brian has been looking for a donor for his daughter Galia. While both he and his son Ethan are partial matches, her best chance of beating acute myeloid leukemia is an unrelated full match – a stranger, a good Samaritan.

There are currently 26,000,000 people on the bone marrow registry worldwide. Only one is a full match for Galia.

On Friday, an anonymous European man donated his bone marrow. On Father’s Day weekend, hope will fly across the Atlantic, and Brian will get the gift he has been praying for.

Galia Sodoma 2016 (6)Brian, mom Valla, Ethan, and Galia have temporarily transplanted themselves 400 miles from their Nevada home to Tucson, where they instantly connected with Banner University Medical Center Tucson’s Dr. Emmanuel Katsanis, a world leader in bone marrow transplants. They chose Tucson over other large Southwestern metropolitan areas because they believed they could get the best medical care and could remain close to family.

Since April, they have made their home at the Ronald McDonald House. Valla wrote in her Caring Bridge blog:
We appreciate the Ronald McDonald House (Tucson) – it is a blessing for our family…It is a beautiful facility. Different groups come in a cook meals for families. There are leftovers in the refrigerator. In fact, last night Ethan and I ate left-over tamales. Yum!!! Tonight, Ethan had waffles for dinner. We both ate brownies. It is nice and quiet – yet there are kid friendly activities available. This morning, Ethan couldn’t wait to sink some baskets into the basketball net! They have free clothes detergent and a free laundry facility available. It is truly a blessing to have something like this available to us. Did I mention the beds are [Tempurpedic] beds? Wow, very, very comfortable! We are extremely grateful.

Brian recently described why the RMH has been such an important base for the family:

You don’t know what you’re going to need until it happens. It’s not until the 2’ x 4’ hits you over the head when you’re buried in blood reports and dealing with your kid’s cancer every day, when you start to think, ‘Oh wait, where am I going to stay? Oh wait, I need someone to watch my son.’ We didn’t know what the Ronald McDonald House was. The hospital set it all up and it has been very easy. Sometimes we even take it for granted that, for two months, every day we’re going back to the Ronald McDonald House. It’s only 10 minutes up the road from the hospital, and you can’t beat that.

On this Father’s Day, we’re wishing for Brian a full recovery for Galia, and for the fathers in your life, we’re wishing love, peace, and family.

Happy Father’s Day.

 

Zack and Jayden

Restoring Normalcy

A note from Kristen, mom of Zack & Jayden, and please read their story in the White Mountain Independent SHOW LOW — This Mother’s Day, Kristen Desmangles has a few more things to be thankful for. Her 4-year old son, Jayden, was diagnosed with intractable epilepsy last year but he is responding to treatments. Source: […]

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A Place to
Be A Family

Restoring Normalcy

A note from Kristen, mom of Zack & Jayden, and please read their story in the White Mountain Independent


SHOW LOW — This Mother’s Day, Kristen Desmangles has a few more things to be thankful for. Her 4-year old son, Jayden, was diagnosed with intractable epilepsy last year but he is responding to treatments.

Source: Finding a home away from home


 

Hi Cheri,

Thank you so so much for the discount at [the hotel]. We had to stay an extra day (today/tonight) because of the bad weather at home and because Jayden had a seizure yesterday and then again this morning, so I need to be here and not on the road in case he rolls into a life threatening one. They were a possibility after his procedure yesterday, I was just hoping it wasn’t going to happen.

Sadly, I’m still crummy otherwise, we would come there. Being here makes me realize how I appreciate being there exponentially more. Outside of the obvious reasons, financial and it being an optimal fun and friendly environment for Jayden, I really appreciate a friendly, understanding environment where people are always kind, I can talk through the good or bad day and I don’t feel isolated, living in a world that has the luxury of having a “normal” life I had until just under a year ago by a few days.

So, the fact that you even thought to help and reach out to try and help us with a discount meant the entire world to me yesterday. It’s a hard week as we approach the 1 year mark of Jayden’s first seizure. Equally hard to not be there. And then being sick to boot, it’s just a bunch of hard. So, I just want you know how your persistence (finding the hotel and then dealing with their not so with it staff) and thoughtfulness touched my heart and soul deeply and significantly.

♡♡♡♡♡♡♡

Truly, I love you guys.
Kristen

 


 

Jayden-Card-400x309

Adventures from Yuma

Marco might look like your average sixteen year-old kid – tall & lanky, t-shirt from one of his favorite bands peeking out from underneath his button-trimmed jacket, and chains drooping below his left pants pocket that signal perhaps a touch more edge than mom would like. His hair, long and chestnut brown, hangs over his […]

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A Place to
Be A Family

Adventures from Yuma

Marco might look like your average sixteen year-old kid – tall & lanky, t-shirt from one of his favorite bands peeking out from underneath his button-trimmed jacket, and chains drooping below his left pants pocket that signal perhaps a touch more edge than mom would like. His hair, long and chestnut brown, hangs over his right eye, seemingly obscuring his vision. This, however, is not the case.

Marco’s vision is not veiled by his hair, but rather his genes. Legally blind and with very little hearing, Marco and his family are all too familiar with overcoming medical obstacles. His little brother, Isaiah, fights respiratory and neurological illnesses that need expert attention. You might think these were the toughest problems they had to deal with, but they’re not.

You see, for Marco, cochlear implants are available and on the horizon. Isaiah’s ailments are demanding but treatable. All of this is available to them through Tucson’s first-rate hospitals and clinics. The boys, though, live in Yuma, two hundred and fifty miles away.

Isaiah and Marco love playing together, and a half-day road trip can be a lot of fun…once, maybe twice. Two in the same day is exhausting. Almost two dozen in less than eighteen months is punishing to their spirits and to mom Cynthia’s family budget.

Marco-Isaiah-Foosball-600x400This is where the Ronald McDonald House steps in. The Ronald McDonald House is a place for families to stay close to each other. Marco can eat a hearty, home-cooked meal so he’s strong for his next doctor’s visit. Isaiah can hop on the free WiFi to catch up on his homework. Cynthia can get a great night’s sleep so she is refreshed for the next day’s long drive home.

To date, Marco and his tight-knit little family have stayed at the Ronald McDonald House for more than 40 nights and enjoyed more than 100 delicious meals from our volunteer Chef for a Day program.  Here they have a place to be a family and their stay here makes the trips to Tucson more of an adventure and less of a chore.

THE STRENGTH OF FAMILY

Meet Joey, Courtney, and Sicily. Both individually and as a family, they are strong and compassionate. They have overcome extreme medical struggles and use that as inspiration to give love and hope to their community. Joey and Courtney were high school sweethearts, destined for a lifetime and a family together. When Joey was only 18, […]

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A Place to
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THE STRENGTH OF FAMILY

Meet Joey, Courtney, and Sicily. Both individually and as a family, they are strong and compassionate. They have overcome extreme medical struggles and use that as inspiration to give love and hope to their community.

Joey and Courtney were high school sweethearts, destined for a lifetime and a family together. When Joey was only 18, he was in a rollover accident that left him paralyzed from the chest down. On a ventilator and unable to talk, the first question Joey scribbled on a notepad was if he and Courtney would be able to have children someday. Joey and his family would spend significant time at Denver’s Craig Hospital, one of the nation’s top spinal cord injury rehabilitation facilities. Because of that extended stay out of town, keeping families together during a crisis is a cause that Joey and Courtney say is close to their hearts.

Flash forward 17 years and you find the couple happily married and volunteering weekly at the Tucson Ronald McDonald House. Still trying to start a family after years of unsuccessful fertility treatments, they were on their last chance; one more attempt at a miracle.

In April 2013, the great news came that Courtney was pregnant. Things progressed normally until August 6. Only 20 weeks into her term, Courtney’s water broke. The doctors told her that she needed to prepare for the worst. While most mothers deliver within six days of their water breaking, Courtney miraculously put off delivery for 11 more weeks, most of that time spent on bed rest at the University of Arizona Medical Center. There she received excellent care and endured with the strength of her family beside her.

Still nine weeks early, little Sicily Elisabeth was born by emergency C-section on October 28, ready to begin her fight for life. On a scale of 0 to 10, with 0 being not viable, the doctors gave Sicily an initial rating of 1. Joey and Courtney were with her in the NICU throughout the next two months, leaving only to eat and refresh. Thankfully, the Ronald McDonald Family Room was only steps away, providing them coffee, snacks, and a quiet place to rest and recharge.

On December 23, Sicily was released from the hospital, and for the first time these three amazing individuals went home as a family. Says Joey, “It’s faith renewing to know how many people there are that care. We couldn’t have done it without the support of our friends, family and this community.”

For families like Joey and Courtney’s, the Ronald McDonald House Charities will always be there to ease the financial burden, to provide hope and comfort, and to support the inspiring mothers, fathers, and children that cross our doorsteps every day.