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.

Stacye and Olivia

The Sky’s the Limit for This One

Olivia was born in Las Vegas on March 20, 2015 to Stacye and Jack — 6 pounds, 8 ounces, blonde hair, blue eyes. Right away there were some hard-to-explain complications but it wasn’t until she was two months old that she was diagnosed with a very rare inherited bone marrow syndrome. It’s called Congenital Amegakaryocytic […]

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A Place to
Be A Family

The Sky’s the Limit for This One

Olivia was born in Las Vegas on March 20, 2015 to Stacye and Jack — 6 pounds, 8 ounces, blonde hair, blue eyes. Right away there were some hard-to-explain complications but it wasn’t until she was two months old that she was diagnosed with a very rare inherited bone marrow syndrome.

It’s called Congenital Amegakaryocytic Thrombocytopenia (CAMT); there are only 100 diagnosed cases worldwide.  It is usually diagnosed in infancy and the only treatment is a bone marrow transplant.  The family was referred to Dr. Emmanuel Katsanis at Banner Children’s Diamond Children’s Medical Center.  Though internationally acclaimed for his work in pediatric bone marrow transplantation, Olivia was the first child he had seen with this disease.

Stacye knew they’d be in Tucson for many months and with five-year-old Josie to care for as well, she was concerned about finding the right place. Jack’s insurance would pay for a motel but they also came to visit the Ronald McDonald House.

“We really didn’t know what to expect,” Stacye said.  “But we just loved it here.  The people are so friendly. The staff really takes care of you.  Dinner time at the House is really great.  It’s a very social time to meet other families who are going through what you are – we’ve stayed friends with some of them.”

Mom and Josie stayed at the House while Olivia was in the hospital.  Eventually Olivia was out of isolation and joined them here.  Jack stayed in Las Vegas to keep working.  All told, the family was at the House for 84 nights.

“It’s lonely in the hospital when you are here from out of town.  Staying at the House made it less lonely. It was a blessing to be so welcomed there.” 

Stacye and her family spent last Mother’s Day at the Ronald McDonald House. And even though she loved it here she’s happy to be back home in Las Vegas, with two-year-old Olivia 100% cured of this incredibly rare disease.

“If this little girl ever says there’s something she can’t do, I’m going to remind her of everything she’s been through already.  The sky’s the limit for this one!”


 

Josie, Stacye, & OliviaEvery day at the Ronald McDonald House, we meet a mother who is struggling in more ways than we can imagine.

  • A single mom who has to leave her job and her older children to care for her five-year-old who has cancer.
  • A young mother trying to finish high school while her tiny, premature baby spends months in the Neonatal Intensive Care Unit.
  • A mom with two autistic sons with inexplicable medical issues.

These moms also want the best for their children and are doing everything they can for their kids. The stress is unbelievable.  Dealing with sometimes life-threatening illnesses, keeping their child’s spirits up (and their own), worrying about the rest of the family and of course, about paying for all the medical bills.

At the Ronald McDonald House, we can provide some respite for these moms – nearly 600 of them each year.  Here, they have a beautiful place to stay, home-cooked meals, laundry facilities, transportation and TLC. Because of your support, we can provide this support to moms at no charge.

This year will you consider honoring your mother, by honoring moms like Stacye who rely on the Ronald McDonald House to make a terrible situation a little bit better?  Your gift stays in Tucson to help families in our community. With your help, we can give them one less thing to worry about – on Mother’s Day and every day.

Happy Mother’s Day to all mothers and the children they love.

 

 

Mason on his tricycle

Solace

Call it a mother’s instinct.  Christina knew that there was something going on with her four-year-old son Mason.  He wasn’t feeling well.  He had a fever and was breathing differently.  He was crying in the night and his cries sounded different to her.   Mason has asthma so his pediatrician didn’t think they symptoms were […]

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A Place to
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Solace

Call it a mother’s instinct.  Christina knew that there was something going on with her four-year-old son Mason.  He wasn’t feeling well.  He had a fever and was breathing differently.  He was crying in the night and his cries sounded different to her.

 

Mason has asthma so his pediatrician didn’t think they symptoms were abnormal.  He thought they were virus-related.  Mom thought otherwise and she “encouraged” the pediatrician (whom she works for) to run some tests.   Within a week he was diagnosed with acute lymphoblastic leukemia (ALL), which is the most common form of pediatric cancer.  Of course it wasn’t common to Christina or anyone in her family.

 

Christina had to leave her two daughters with her mom in Sierra Vista so Mason could start chemotherapy at Banner Children’s Diamond Children’s Medical Center.  Right now he is in remission but treatment will continue for up to three more years.

Mason & Christina
Photographs courtesy of Chris Richards, Tucson photographer

 

At first Christina slept at the hospital in the room with Mason.  Then she finally took a night off and moved into the Ronald McDonald House.

 


“It was the first time in three weeks that I’d slept in a bed and I think I cried all night long.  It was the first time I could just feel what I feel and not have to be strong for Mason. “


 

Since October, Christina and Mason have spent more than 30 nights at the Ronald McDonald House. Mason calls us “his people at the Donald House.”  For Christina, the House is more than just a place to sleep. She says, “It’s good to have you all at RMHC that are now part of our support team.”

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 with 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 […]

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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

 


 

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