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Humbolt Park Boy With Rare Blood Disorder Needs You to ‘Be The Match’ / ABC7Chicago

CHICAGO (WLS) — Alfredo Diaz, a 6-year-old boy from Chicago’s Humboldt Park neighborhood, needs a blood stem cell donor to help cure him from a life-threatening blood disorder.

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Searching for a Bone Marrow Donor – Guided by Angels

Life is a series of ups and downs.  For some, it’s not an even balance, but we keep the faith and find a way to move forward.  This is the story of Naileen Colon. Naileen faces many struggles, but she has faith in the guidance of her angels.

Diagnoses

Naileen grew up in Ponce, on the southern coast of Puerto Rico. At the age of nine, she was diagnosed with megaloblastic anemia, a condition in which the bone marrow fails to produce mature red blood cells.  She maintained a healthy lifestyle to treat it. She lived a pretty normal, happy life for the next 15 years. She got married, had a baby and kept moving forward.

Unfortunately, in 2013, Naileen began to feel very weak. She was always tired and she was struggling with depression.  After visiting her doctor, she was diagnosed with Chronic Lymphocytic Leukemia (CLL), a cancer of the blood and bone marrow.

Relapse

Unfortunately, it was barely more than a year when she had her first relapse.  This began a downward spiral for Naileen.

She had to resign from her job, her husband left, and she moved back into her mother’s house with her son.  Moving back home was a very difficult transition. Her son Onix is autistic, and requires a lot of attention.  In addition, her mom was ill and constantly in and out of the hospital. Naileen struggled to find a balance between taking care of her son, her mother, and herself.  She held onto her faith and remained confident that God would not leave her side. She was being guided by angels.

Her First Angel

In 2015, it was determined that her blood transfusions were not working as planned.  Her cells were not reproducing. Naileen was advised that she would need a bone marrow transplant.  

At this time, Naileen talks about meeting an ‘angel’, Elba Lebron.  Elba is a community engagement representative from the Icla da Silva Foundation.  Elba organizes donor drives and works closely with patients throughout Puerto Rico who are in search of a life saving bone marrow donation.  Elba provided the support that Naileen needed to continue moving forward. With Elba’s help, they hosted numerous marrow drives in Puerto Rico.  Naileen felt better about her diagnosis. She realized that she wasn’t alone. In raising awareness during the donor drives, she gained more hope.  She focused on helping others. Even if she could not find a match for herself, she may be able to help others to find a match. That feeling gave her satisfaction. Her friendship with Elba was a major turning point in Naileen’s journey.

Her Second Angel

Naileen began a pill form of chemotherapy and was slowly restoring her health. She established a friendship with a man named Jerardo, who became her second angel.  As time passed, they began dating and a romance quickly blossomed. “It felt like a blessing, I didn’t think anyone would want to deal with something like this.  He is always there for me, helping me, and he is a great father to my son. My mom was happy to see things turn for me. We moved to Kissimmee, Florida in August 2016.  We wanted a better quality of life, and access to more advanced treatment for myself and my son Onix.

Moving Forward

Naileen enjoys watching movies at home with Onix and Jerardo. She loves the beach, but because of her diagnosis and the risk of infection, she can’t visit as often as she would like. She loves being a mom, taking care of Onix and watching him progress in his everyday interactions with people.  Watching him play makes her happy. Naileen has managed her challenges and is happy with her accomplishments so far, especially with her son, but she wants to do so much more. She understands that the ups and downs will continue, and although there are times when she questions what will happen next, Naileen knows that God’s plan is far more than what she can imagine.  She puts all of her trust in him, and the guidance of her angels.

The Next Challenge

Naileen is in desperate need of a bone marrow transplant.  The doctors have been searching the national registry for a matching donor for 3 years.  Finding a matching bone marrow donor is not an easy feat, especially for patients with Hispanic or Latino heritage.  There is currently no match for Naileen on the Be The Match bone marrow registry.  The registry is the largest and most diverse in the world, but patients of Hispanic origin only have a 46% chance of finding a potential match.

The solution to this challenge is to get more people, especially those with diverse ethnic origins, to join the bone marrow registry.  You can join online in less than 10 minutes, and agree to become a potential donor for patients like Naileen.

Please join the registry, for Naileen or the 14,000 other patients who are searching for their match.

JOIN THE REGISTRY

You can also help by sharing Naileen’s story.  As we increase awareness of the need for more potential donors, especially for people with diverse ethnicities, we hope that more people will understand the importance in joining the registry. The donation process is not difficult and there is no reason to be afraid.  You can read more about it here: donation process

Thank you for reading Naileen’s story.  We hope that her angels will help us guide more potential life-savers to join the bone marrow registry.  It can start with you.

JOIN NOW

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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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