I recently took these photos of Keira when she was playing on Livvy’s Make-a-Wish swing set, and I can’t stop thinking about them. I’m sure to a “normal” parent, this would look like everyday life. But to me, seeing Keira’s face in both pictures…it just exudes hope, joy, happiness, and gratefulness. Her standing there, so strong…it’s what a miracle looks like (to us anyway). It is something her sister Livvy was never able to do. And the fact that Keira can, will forever blow me away.
I’m sharing these photos here not for just our own memory, but to also give hope to any other family whose newborn receives this diagnosis; to show the advances in modern medicine; to show what’s possible when the government and insurance companies get out of their own red tape and grow a heart; to show what is possible if EVERY child is screened at birth for this disease. Thousands of lives would be saved annually. And so many families would be spared of the devastation, grief, and heartbreak that comes with losing a child. Instead, they would get moments like these.
Wow. It has been a minute (or more like 6 months or so) since I’ve actually posted an update here. Life, travel, advocacy, parenting, work, holidays and everything in between has taken up our time and if there’s one thing I know: time with our girls over anything else is time not wasted.
Now that I have a few minutes, I wanted to share an update on Keira. She is officially 3 years old (as of January 9th) and you would never know she was diagnosed with the same disease as her sister, who is enrolled in Hospice. The difference between the two is night and day.
Keira on the playground at schoolKeira and Eva with Clifford, the big red dog.Keira at school on Ground Hog’s DayClimbing the geodome in our back yard (something Livvy could never do)Keira and our new puppy, Penny LaneKeira at gymnasticsPutting on makeup at her vanity.Swinging with Livvy
We are always looking at Keira in amazement over one thing or another. If it’s not her ability to run and climb, it’s how advanced she is in communication (she has since moved up a level in school because of it) or her love of make up or her opinions on our attire, or her skills at back seat driving. I wish I could share a video of her every single day because the world (and more particularly the FDA) needs to see what gene therapy for MLD (Metachromatic Leukodystrophy) can do. It’s truly been our miracle.
Just for fun…we asked her the following questions so you could get to know her right now:
1. If you won a million dollars, what would you buy? A Barbie Lego!
2. How long does it take to get to Italy? Far
3. What job would you like to do when you grow up? Elsa
4. At what age do you become an adult? 16
5. If you could be a superhero, what superpower would you have? I can use powers, and I can make ice.
6. What is your favorite animal?
Seahorse and horses.
7. If you could eat one thing for the rest of your life, what would it be? Mac and cheeeeeeese!
8. What’s your favorite color?
Pink and Orange
9. What does love mean to you? It means I love you!
10. What’s your favorite movie? Elsa and Anna
11. Where did you go in Paris?
The Eiffel Tower!
While she is definitely a “three-nager” and quite sassy and independent, we always remind ourselves that even the hard days are miraculous days. Had she not received this treatment, she wouldn’t even be speaking at this point. So even a “No!” Or “I’m not going to!” response is internally met with a bit of joy on our part. We never got these moments with Livvy so we cherish it all; the good, bad and the sassy. 🥰
This month has been a whirlwind of travel – first to Atlanta to speak about Right to Try 2.0 at the State Policy Network’s 30th Annual Conference and then to London to speak about the gene therapy Keira received, how it has transformed her life and how we are helping other families like ours. Next? To Milan for Keira’s 2-Year post- gene therapy check up! Time flies!!
I was so honored to be included in these opportunities this month and I hope it only sheds a light on the legislation that needs to change to help families and patients like our daughters.
I was shocked – in a good way – to see Keira’s sweet face on every seat in the room when I walked in to speak. The face of hope for other patients striving to get that one treatment in the world that could change their life right here at home in the US, as opposed to having to raise money and uproot their lives for access to life-saving treatments.
I am so grateful for the Goldwater Institute who invited me to SPN’s 30th Annual conference to speak at their panel on “How Your State Can Unleash the Future of Medicine”. They are an amazing organization doing so much across the nation to make positive change. My time with them only inspired me to do more.
From Atlanta, I headed across the pond to London to speak to the staff of the genetics company who was instrumental in treating Keira.
Their 170+ staff rarely get to actually see the results of their hard work so I was amazed at the feedback I received sharing how well Keira is doing today and the work our family has done to help others.
They are true miracle workers and it was an unbelievable honor to meet them and share that it’s because of them we get to see miracles on a daily basis through Keira.
After testifying at the Arizona Senate and House of Representatives, sharing our family’s story and how the expansion of the original Right to Try Bill could help families like ours, I’m thrilled to share that Right to Try 2.0 has passed and was signed by Governor Doug Ducey!
Right to Try 2.0 is a first-in-the-nation reform that will empower seriously ill Arizonans to access personalized treatments that have yet to receive full approval from the U.S. Food and Drug Administration.
Goldwater Institute
We had the pleasure of meeting Governor Ducey last week during the Ceremonial Bill Signing at the Arizona State Capitol. The girls were thrilled to go (after a quick lesson in US government so they knew what a Governor, Senator and a Bill is).
Governor Ducey, Senator Nancy Barto and myself all spoke before he signed the Bill. You can view a portion of that here:
“Now, critically ill patients can get access to these groundbreaking treatments here in Arizona, so no family has to go through what the Riley‘s did.”
SB 1163, sponsored by @NancyBarto, was just signed into law. Hear how this bill will create new opportunities for Arizonans. ⬇️ pic.twitter.com/b0kkGMSOtn
The Goldwater Institute’s Right to Try for Individualized Treatments reform builds on the original Right to Try law and protects patients’ right to try to save their own lives by seeking treatments tailor-made for them that are not yet FDA-approved. This common-sense measure accounts for new innovations in medicine and helps get those innovations to the patients who need them the most.
As I mentioned in my speech, the United States is the greatest country on earth and access to life-saving medical treatments should be among its many benefits. We are thrilled Arizonans now have that right and are hopeful other states – and eventually the nation – will follow suit.
You can read more about Right to Try 2.0 and our efforts here on Reason.com.
And here some photos from the signing at the Arizona State Capitol:
Photos by Neal Mei Photography, courtesy of the Goldwater Institute.
In 2020, when we knew we had A LOT of money to fundraise to save Keira’s life, Dave’s Aunt Malinda suggested her friend Jennifer’s non-profit as a supplement to fundraising on GoFundMe. I had never heard of The Armer Foundation for Kids before and was a little skeptical at first but after some research and reassurance, accepted the additional help.
Not only did they create a fundraising page on their website (which took ZERO fees out for processing, like GoFundMe does) but they made flyers, t-shirts, told everyone about us and even held a yard sale in the middle of the scorching AZ summer at our house. And they are a big part of the reason why we made it to Italy.
After going through this experience and seeing all they did for us I knew I had to help. When we got back from Italy I told Jennifer I wanted in. I wanted to do whatever I could to help other families like ours. And I’m honored to say that ever since then I’ve been a board member.
Through my PR agency, I help the other families they are fundraising for to get on TV, get their stories in the paper and raise awareness to increase fundraising for their choldren. It has been amazing to give back in this way when I know that insurance doesn’t cover it all.
And another way is attending their annual gala – their biggest fundraiser of the year which just took place on August 6th at Ashley Castle in Chandler, Arizona.
It was an incredible evening, emceed by Tess Rafols of 3TV, that showcased some wonderful musical talent, an amazing silent auction and the heart-wrenching stories of the Armer Foundation families who are in need of financial support for their children.
Jennifer was also kind enough to mention our family at the gala and how that yard sale for Keira inspired her to open their thrift store (located at 9830 S 51st St Suite A128, Phoenix, AZ 85044). For any items you have to donate, please consider taking them there and helping these families.
It’s been so busy this past month that I haven’t had a chance to update the blog regularly but I can’t not mention our trip to Philadelphia, Pennsylvania last month to attend The Calliope Joy Foundation’s annual Cupcake Gala. One of the special guests in attendance? Our very own Keira.
The Calliope Joy Foundation was founded by Maria Kefalas and Pat Carr, parents of Calliope Joy Carr who just passed away earlier this year – defeating the odds of MLD by making it to age 12 rather than the expected average age of 6. Her journey inspired Maria and Pat to not only do all they could to help their own daughter but to also help make a difference for other families facing this devastating disease.
This all started by selling cupcakes to fundraise, hence the name of their biggest annual fundriaser, the Cupcake Gala at Loews Philadelphia Hotel.
We were honored to be in attendance, not only for Keira to be a special guest but more so to finally meet Maria. It was Maria who informed me on June 20, 2020 (the day after we got Keira’s diagnosis) that there was actually a treatment option to give her a potentially normal life but that we would need to move to Italy to get it. Within 24 hours she introduced us to the team of doctors at Ospedale San Raffaele and our lives were changed forever.
To say we are grateful for her (and her family) is an understatement. She is one of our many angels on earth helping us through this unreal journey.
While there, we also had the chance to meet one of the other special guests, Celia Grace, a little girl from Alabama who we helped get this very same treatment right here in the US. Due to our connection with Blue Cross Blue Shield of Arizona, they were able to work with the Alabama team to get this treatment approved after the Hamlett family had already received two denials. To see Keira amd Celia Grace running around playing with each other like “normal” kids their age was amazing.
Here are a few photos from the Gala:
Calliope’s nurse Peggy, Maria Kefalas, Kendra, Keira and DaveThe Rileys and the HamlettsDave with former Eagles quarterback Ron JaworskiThe Hamletts giving an award to Dr. Paul Orchard
And here are a few photos from our time sight seeing in Philadelphia:
It was a wonderful trip and we look forward to returning next year!
P.s. Maria is also the author of Harnessing Grief, where she shares her own story of how she turned her grief over Cal’s diagnosis into her superpower. That super power? Cal’s legacy and everything the Kefalas-Carr family does for families like ours through the Calliope Joy Foundation and CureMLD.com.
I would be remiss not to mention how much of a priority it has been for us over these past two years to ensure Eva (our oldest, who is 6), has one-on-one time with Dave and I or time together with just us and not her sisters. Livvy and Keira’s medical journeys have been the epicenter of our world and we didn’t want her to feel pushed aside or overlooked in anyway while we tended to their care.
Thankfully, we have a great support system surrounding us with grandparents that spoil her every chance they get. But they also help with the other girls so we have time with just Eva.
Usually only one of us will take her to her after school activities so we can give her our full attention. Dave and I have regularly taken her to a nearby bowling alley and arcade so the three of us can just have fun together and get lunch. And our latest Eva-only mission included a surprise trip to Disneyland just for her!
We honestly did not think we would be able to pull off something like that. With Livvy in Hospice we really had to ensure our family was prepared both mentally and emotionally should anything happen or her health decline while we were away. Dave and I were both really nervous to leave her (What if she passed away and we weren’t with her? That was a real concern.) But all the grandparents reassured us – she has been doing well lately and her health has plateued a bit thankfully – so off we went.
And we are so glad we did! Eva was so excited it was time only for her and us, AND her first trip to Disneyland to boot! We booked it through John Pagoto of Inteletravel – who was an amazing Disney resource for everything we needed to know, do and see.
We surprised Eva with a Disney shirt hidden in a giant egg on Easter Sunday. Landed in LA that afternoon and off we went to the park for the next 2.5 days.
Her first rides were Haunted Mansion, Splash Mountain and Thunder Mountain. She really jumped right in, but sometimes begrudgingly (and understandably). Her favorite rides? All of the Star Wars ones! Dave was so happy. 😆
And, to be honest, we were all happy. It was a great, much needed getaway, since we always need to stay close to home for Livvy.
That alone time with Eva is priceless and hopefully we are creating some amazing memories for her amidst all of this tragedy. Ways in which she will look back and only remember these great moments being seen, heard and loved just as much as her medically fragile sisters.
Last year after we returned from Italy for Keira’s treatment we were connected with a non-profit organization called Sparrow Clubs USA which is based in Oregon but getting into the Arizona market and looking for a family – in particular a child with medical needs like Livvy – to partner with as they launched their first Sparrow Club at Hamilton High School in Chandler, AZ.
After hearing the story of how Sparrow Clubs began and what it does for high school students, as well as families who have children with extreme medical needs, it was a no brainer that we wanted Livvy to be part of the impact it would make on our local community.
To put it simply: “Sparrow Clubs exist to set the stage for simple, yet heroic, acts of kindness in schools and youth culture by empowering kids to help kids in medical need.” And as Matt Sampson (the Executive Director of Sparrow Clubs) and their community partner Amy Anderson of Black Rock Coffee explained, Hamilton High would adopt Livvy as their first “sparrow”, the entire student body would do up to 300 hours of any kind of community service work and as they did so it would unlock the funds that Black Rock Coffee donated for Livvy.
Sparrow Clubs made flyers for the school, created this lovely video about Livvy (which brought us to tears), and before we knew it we were touring classrooms at Hamilton High this week with the Student President of Hamilton’s Sparrow Club Richa Churravuri.
Students watched the video, learned about Sparrow Clubs from representative Cory Burket, I briefly told our family’s story and the kids all lined up to meet Livvy and give her a fist bump. She loved it!
Livvy with us amd the teams from Sparrow Clubs, Hamilton High School and Black Rock Coffee.
The following day (today) we were invited to their school wide spring assemblies which were divided into two assemblies on the football field due to the school size (4,000+ students) where Richa got to speak about Sparrow Clubs, how students could get involved and to introduce Livvy.
It was a really cool experience for her (and us) as she got to meet the Hamilton Husky mascot, take a picture with the cheerleaders and get cheered on by all of the students. I overheard one student who met her yesterday yell out “LIVVY! That’s my girl!”
And as I shared with someone today, having her be a “sparrow” and part of this experience is not about the funds for Livvy’s new stroller but more so about the impact that meeting her and being a part of her story would make on others. How it would instill kindness, compassion and empathy in these students, and ultimately make a ripple effect of kindness in our community.
We are honored to be a part of this experience and hope to see more Sparrow Clubs throughout the state.
Yesterday, October 2, 2021 was Keira’s 1st “re-birthday”, one year from the date that she received her renewed stem cells that would allow her to live a normal life.
It is beyond surreal to say that our almost-2-year-old is a 1-year survivor of MLD, of all things! And it is even more surreal that she is doing SO many things that Livvy never could because this very disease had already begun stripping away her abilities at this age (21 months old).
Just some of the things she can do now that she wouldn’t have been able to without treatment:
Walking
Talking in sentences
Running
Climbing
Walking up steps
Counting to ten
Learning her alphabet
Spinning around
These simple things, that we as “normal” parents can take for granted, are things that amaze us on a daily basis.
We are beyond grateful for so many people who helped us get her this life-saving treatment – not just the doctors and scientists who made it possible but the nurses, the hospital staff, the volunteer families in Italy who helped us during our stay, our own family, friends and even strangers who became so invested in our girls and their journey.
The connections we have made are priceless and Italy will forever have a special place in our hearts. We are looking forward to returning next year for her next check up. ❤🤍💚
Here is a flashback to one year ago today at Ospedale San Raffaele:
I absolutely cannot believe it has been (almost) one year since Keira received her life-saving gene therapy treatment in Italy (her official re-birthday date is October 2, 2020). Our time in Milan seems like a lifetime ago.
Yet here we sit at Phoenix Children’s Hospital for her 1-year post gene therapy check up!
And I am so happy to say I am not worried about her results one bit! She has been running, climbing and talking more and more each day. She is even advanced for her age in some ways and we are in awe of her every day.
While we normally would need to return to Milan for her follow ups, because of COVID the doctors there managed to figure out a way to do the testing here locally and send back her most important blood work on dry ice overnight to Ospedale San Raffaelle. While I love Italy and have no problem with returning, it is especially nice to stay home for this check up so we do not have to leave Livvy who continues to worsen.
As for the check up itself, we have a busy two weeks ahead which will include the following appointments:
Bloodwork
Ultrasounds (abdomen and thyroid)
MRI
Echocardiogram
EEG
Appointments with Pulmonary, Pathology and Neurology
There might be one more I’m forgetting but needless to say, there are a lot of things they will be looking at to ensure she is developing normally.
The one thing in particular which can only be checked in Italy is one of the results from her bloodwork which looks for any ARSA antibodies. The ARSA enzyme is something her body could not create prior to gene therapy. And now that is does her body began trying to fight it because it wasn’t used to it. However, the antibodies have only gone down in numbers since and hopefully at this point will be completely gone. Keep your fingers crossed for us there!
We will be sure to keep everyone updated once we receive her results. Thank you for your continued prayers, love and support! It means the world! ❤
The Riley's Road to Italy 