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Patient Update: Mighty Mikey Sexton

Patient Update: Mikey Sexton – August 22, 2018

Mikey met with his pediatric CML specialist a few weeks ago and he is doing great! The tyrosine kinase inhibitors (his TKI medication) are working and his chronic myeloid leukemia levels are very low. He starts school next month and his family is very happy.

We are happy also. Way to go Mikey!


Mighty Mikey Sexton – May 16, 2018

Did you know that an orange ribbon promotes leukemia awareness and shows support for leukemia survivors and their family and friends?  Orange also happens to be Mikey Sexton’s favorite color. It’s a strange coincidence because seven year old Mikey was just recently diagnosed with CML (chronic myeloid leukemia) and is in need of a bone marrow transplant.

CML is a rare form of blood cancer that typically affects older adults, so it is rarer still to be diagnosed with CML as a young child.  It begins in the blood forming cells of the bone marrow, and eventually spreads to the blood. CML is a fairly slow growing leukemia, but it can also change into a fast-growing acute leukemia that is hard to treat.

Mikey’s Mom & Dad

Mikey’s father, Mike Sexton, who is a corrections officer and volunteer fireman says, “he was really tired, kind of pale, and not really acting like himself.”  After his diagnosis, and a week at the hospital, Mikey spent 2 weeks at home taking oral chemotherapy drugs.

Mikey and his brother

His doctors believe that a bone marrow transplant will be his only hope for a cure.  Mikey’s younger brother was tested, but he is only a 50% match.

This is where the Icla da Silva Foundation steps in.  Patients like Mikey, who need a transplant, rely on us to help them find a matching bone marrow donor.  We have begun working with Mikey’s family to schedule marrow drives, asking people to join the Be The Match bone marrow registry.  You can join the registry by by attending one of our drives, or you can join online, providing basic contact information and some medical history.  Be The Match sends out a swab kit, with simple directions to capture your HLA type, and you will be entered in the registry with the hopes of matching a patient in need of a marrow transplant.

There are more than 14,000 patients with various forms of blood cancer who can be saved if they are able to find a matching donor.  The online process to join the registry takes 8 minutes. If you match a patient and agree to become a donor, the gratitude and understanding that you saved a life lasts a lifetime.

You can join the registry in honor of Mikey right here, you may be his match.joIN the registry

Another way that you can help is by spreading the word about Mikey’s story.  You can share this story by using the links below, and ask your friends to consider joining the registry.  If you have access to a larger group of people – through an employer, a club, a school or a church organization, you can host a drive in honor of a patient.  We do most of the work, you simply have to fill out the request form here  and make the introduction.

You can also help the family directly by making a donation to their personal gofundme page.

Mikey was deemed healthy enough to go back to school, and he couldn’t be happier.  This video from his hometown Spectrum News, shows the overwhelming support received at his elementary school.

Warm Welcome to Classmate Battling Leukemia from Spectrum News

http://http://spectrumlocalnews.com/nys/capital-region/news/2018/04/09/fort-ann-students-offer-warm-welcome-to-classmate-battling-leukemia#

Mikey loves hockey

Mikey is a sweet boy who loves being with his friends.  Although he was very excited to return to school, his parents have decided it would be best for him to attend ½ days, since Mikey is physically exhausted and can’t make it through a full day.  

He likes reading, playing hockey and being a tiger scout…and of course, he also loves the color orange.  We have high hopes for a matching donor, and when the time is right, a successful transplant. Keep going Mikey!

 

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Veronica’s Story – Searching for a Matching Donor

It was winter and she had a bad cold.  The cold had triggered an asthma attack and her parents were worried.  They took her to the emergency room.  The attending doctor ordered a chest x-ray to rule out pneumonia. Veronica did not have pneumonia…but the radiologist was concerned.  Her bones appeared larger than normal for a girl of her age.

After a year of referrals to various doctors – endocrinologists, metabolic specialists, radiologists, and hematologists, after multiple rounds of bloodwork, genetic testing and numerous x-rays, it was determined that Veronica Depauli had hardened bones throughout her body. In March 2016, Veronica was diagnosed with a form of osteopetrosis (autosomal dominant osteopetrosis type 2, or ADO2).  ADO2 is a rare disorder characterized by increased bone density and abnormal bone growth, which can lead to recurring fractures, vision loss, hearing loss and facial paralysis. It can also impair the function of bone marrow, because the bones are growing at a disproportionate rate, which will prevent the body from producing new blood cells and immune system cells.

Veronica Depauli is a beautiful, intelligent 7 year old girl.  She likes singing and art. You wouldn’t know it by watching her draw, or play with her younger sister Annabelle, that she has a rare disease.  You wouldn’t know that her optic canals continue to narrow, which may result in vision loss, or that her bone marrow space has diminished, although it still continues to function.  With each passing day, the severity of her symptoms continue to increase. Her little sister helps distract Veronica whenever she is in pain. She brings her ice packs and coloring books and tries to get her to smile by singing.  She does the best she can to help her big sister.

Veronica Needs Our Help

Veronica Depauli needs a bone marrow transplant.  Her doctors believe it can markedly improve her osteopetrosis and offers the best chance for longer-term survival.  

The challenge with every bone marrow transplant is finding a matching donor.  The difficulty is finding someone who has a similar HLA type to yours. HLA is a protein, or a marker, found in most cells in your body.  Your immune system uses these markers to recognize which cells belong in your body, and which do not. When two people share an ethnic background, there is a better chance that their HLAs will match up and a transplant can take place.

Unfortunately, there are currently no matches in the national database for Veronica.  Currently, Hispanic and Latino patients only have a 46% chance of finding a matching donor.  This is because only 11% of the current donor pool are Latino. Veronica’s mother, Elise, is of Peruvian/Ecuadorian descent.  Her father, Federico, is Uruguayan.  We need more people of Hispanic and Latino heritage to join the registry.

Finding a Bone Marrow Donor

The Icla da Silva Foundation is working with the Depauli family to help find a matching donor.  We are the largest recruitment center for the Be The Match registry and we focus on adding ethnic diversity to the bone marrow registry.  As more people of Latino descent are added to the registry, hope is increased for each of the 16,000 patients who are in need of a bone marrow transplant every year.

You can join the registry, and add hope for Veronica, right here:

 join the registry

Veronica’s parents have been very active in spreading the word and trying to get more people to join the registry.  Not just for their daughter, but for all of the patients who are in need of a life saving transplant.

“It’s been very discouraging and I am desperate because God forbid my daughter does not get a match” – Elise Luciano, Veronica’s Mom

“Please help us, what would you do if it were your child, your family…please join the registry, you could save somebody’s life” – Federico Depauli, Veronica’s Dad

Joining the Registry

The steps to join the registry are simple:

  1. Register online by clicking the link.
  2. Set-up an account with a password, and answer some basic background and eligibility questions.
  3. Receive a swab kit in the mail so they can get a copy of your HLA marker by swabbing the inside of your cheek with a q-tip.
  4. Return the swab kit so you can be added to the registry.

If you match a patient in need of a life saving transplant, the vast majority of bone marrow donations occur through a process called PBSC, which is a non surgical procedure that is very similar to giving plasma. If you would like more information on the typical donation process, please click here.

Despite thier continued challenges, Veronica’s parents hold onto the hope that a matching donor will be found.  

“One day my daughter will be pain free, one day my daughter will be able to live just like any other child” -Elise Luciano, Veronica’s Mom

We hope so too Elise.

Please join the registry for Veronica Join the registry

 

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PATIENT STORY: Victor Garcia

The inspirational Victor Garcia, and his adorable little sister, Nayyelyn, are two faces you are not likely to forget.  Theirs is a beautiful example that where there is love, anything is possible.  The dynamic duo has given us something to celebrate here at The Icla da Silva Foundation and we know you will love them just as much as we do.

About Victor

Victor is the sweetest 11-year-old boy you may ever meet.  He is also a shining example of how terrible adversity is able to cultivate strength and dignity, even in the young.  Like any fun-loving and shy boy his age, he has an insatiable passion for Legos, cars and Pokémon.  When he is not playing with any of these three collections, he is happily watching Youtube videos about them!

Hailing from La Romana in The Dominican Republic, the Garcias were connected with The Icla da Silva Foundation when they discovered the local hospitals did not have sufficient resources to perform the bone marrow transplant Victor desperately needed.

Victor’s journey with Acute Biphenotypic Leukemia (ABL), an uncommon mix of both kinds of acute leukemias, started in the spring of 2015. The doctors determined that Victor needed a bone marrow transplant in order to live. With the help of The Icla da Silva Foundation, Victor’s younger sister, Nayyelyn, was tested to see if she was a match. While a patient has the highest chance of finding a match among their siblings, that chance is only 30%, so when Nayyelyn’s results came back stating that she was a 100% match for her big brother, his mother Ana was so grateful.

Nayyelyn knew her brother was very sick so when Ana explained to her that she has the cure for her big brother inside of her body she knew what she had to do.

Life-Saving Sister

Nayyelyn, Victor’s little sister, is a lively seven-year-old with big dreams for the future.  Her zest for life lights up the room and she absolutely loves to be the center of attention.  Her current passions are Hello Kitty, Anna (from Frozen) and fashion; especially anything pink, purple or blue.

Nayyelyn is the perfect example of the wisdom and strength children often exhibit when faced with life-threatening situations. She took her role as her brother’s donor very seriously and she is extremely proud of her choice. When asked if she was scared about the procedure she replied,

“I wasn’t scared when they told me what I needed to do because I love my big brother and I knew I wanted to save his life.”

Journey to Transplant

The Icla da Silva Foundation started assisting the Garcia family in November 2015. The chain of events in Victor’s journey also initiated close communication between Victor’s doctor, his mother Ana, and the Foundation.

After months of detailed planning between doctors, social workers, consulates and the Foundation, Victor was accepted for treatment under a clinical trial at Yale New Haven Teaching Hospital in Connecticut. The Foundation started making arrangements to get Victor, Ana and Nayyelyn to Yale for his life-saving transplant. Victor finally arrived in the United States in August 2016.  The Icla da Silva Foundation is grateful to the fantastic Ronald McDonald House in New Haven where he and his family have stayed during his treatment and recovery.

Transplant Day

On September 19th Victor was admitted to the hospital and he began the week long process of preparing for the transplant.

Nayyelyn was admitted for her bone marrow donation on September 26, 2016. She went into the procedure with the same sense of pride and duty she exhibited when she found out she could be her brother’s donor.The donation went perfectly. The bag of her life saving marrow was taken to Victor a few moments later and the next leg of his journey began.

A Hard Winter

Victor was discharged about a month after his transplant. Unfortunately, November brought both the winter and another extended visit to the hospital for Victor, who was being closely monitored for signs the crucial bone marrow transplant would be rejected.  This time, however, the culprit was an infection – a nasty but treatable one – which left him in recovery for another month.

The medication caused weakness, exhaustion, peeling skin and shaky hands, but it completely cleared the infection and  Victor made it through. All was on track for an amazing recovery and a long life ahead for this inspirational young man.  Amazingly determined, he was declared healthy and triumphantly discharged by Christmas Eve 2016.

Surprise!

After spending time all this time with the Garcias, Johanna, the Program Coordinator at The Icla da Silva Foundation had fallen head over heels in love with this beautiful family.  Johanna’s own story of hope changed in 2010 and her idea had already started to form.  She knew that Victor and Nayyelyn were special, and deserved to be recognized for the light they shone into the world.

After Christmas, Victor was on the mend, eagerly awaiting to be cleared for a sightseeing trip to NYC.  Victor was due home in February but his doctors delayed the trip until he was well enough to travel.   Time was short and Johanna had a plan.

On a secret mission, Johanna arranged a fantastic two-day adventure for the family with a few hidden gems around each bend.  Little did they realize how fantastic the final surprise would be! Click here to read about how The New York Yankees took the two little Garcias and their support team on an amazing adventure with some pretty memorable chaperones.  

A Victor-y

The Icla da Silva Foundation has loved watching Victor’s fighting spirit on the road to recovery. His doctors continue to monitor Victor’s progress, making certain his new cancer-free blood cells are multiplying properly.  He is getting stronger each day. His cell count keeps climbing and he is slowly being allowed to be a normal kid again, but none of this would have been possible without his life-saving donor and little sister Nayyelyn.

Icla did not find a match all those years ago, but in her memory, the Foundation has been able to help so many families in the United States and all over the world. Register to be more like Nayyelyn.  If you would like to support the Foundation’s Patient Services, the program that saved Victor’s life, please go.

Like Nayyelyn, you are the key to a long and happy life for big brothers like Victor.

 

 

 

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