The Icla da Silva Foundation has been working with 8-year-old Julian Morales and his family for four years. Finally, after hundreds of drives and thousands of sign-ups, a matching blood stem cell donor has been found.
Julian and his family have fought a tough battle…and their journey has only just begun.
Can You Imagine?
Julian was diagnosed with Dyskeratosis Congenita when he was only 3-years-old. DKC is a rare genetic disorder in which the bone marrow does not produce enough blood cells.
Throughout his young life, Julian’s body has endured pain and suffering. He has lesions on his tongue and often cannot eat. It affects the way he speaks. Sometimes he has pain just from walking. He has spent entire evenings crying because of that pain.
Insufficient blood cells mean that Julian has always been immunocompromised. He is constantly in danger of serious infection. This is why his mother has always kept him close….there have been no playgrounds, birthday parties, or water parks for Julian.
Stress on the Family
All the while, his parents Mayra and Dani have had to deal with the unknown. When will a matching blood stem cell donor be found for Julian? When will his life-saving donor join the registry? There has been a lot of confusion and many setbacks. Matches had been identified, but potential donors have said no.
They have had to hide their fear while doing the best they can to manage the hopes and dreams of a little boy with a life-threatening disease. They have kept him safe and hoped for the best.
Even his adorable little sister Bella has had to bear some of the weight on her shoulders. She is always worried about her brother’s well being.
Julian and his family have managed this remarkable challenge like true warriors. They are fighters…all of them. They never stopped searching for his cure. They never gave up hope and they have always been actively involved.
The family has been strong advocates for donor registration. They are at every local recruitment drive. They have made themselves available for every press opportunity, both in English and Spanish. They shared their search, and continue to share the mission through hundreds of social media posts.
They have been the leaders of Julian’s search for a matching donor and we have been proud to be on their team.
Even now, after a blood stem cell match has been found, and a transplant has been scheduled, they continue to raise awareness of the need for more stem cell donors.
We are grateful for their passion.
Continuing Julian’s Journey – And Helping Others
As Julian continues on the road to his transplant, his parents have been documenting his trip to the Cincinnati Children’s Hospital Medical Center. They have been filming some of the tests and evaluations that Julian has been going through. They have included their thoughts and some of the tears.
They are sharing this journey to help others with their experience. We appreciate their efforts to video and share. We hope their documentation will make the experience easier for the next patient.
Below is an overview of the first 6 days. You can follow them more closely through their Facebook page: SaveJulian
Julian’s Surprise Drive-By
Celebrating Julian’s upcoming transplant with a surprise “drive-by” due to COVID-19. Julian has always received tremendous support from his family and friends.
Road-Trip to Cincinnati
A 16-hour drive north, avoiding riots and maintaining curfew along the way. It’s never easy.
As they begin their life-saving road trip, Julian’s parents are anxious. Dad admits his fear and hopes for the best. Everything has been scheduled, but they will not know the outcome until it’s over.
Even during their journey, these Warriors are still supporting the message of adding more donors to the Be The Match registry.
Day 1 – First Day of Evaluations for Stem Cell Transplant
They are up early to get breakfast so they can be at the hospital by 8AM. Today’s schedule includes some bloodwork, COVID testing, Pulmonary Function Tests (PFT), and meeting with doctors.
Unfortunately, the COVID test was the most uncomfortable for Julian.
Day 2 – More Scans and Lab Work
Julian had CT scans, MRI’s, more lab work, and consultations with doctors.
At the end of the day, he just wanted some chocolate cake, but he found out that there is no Publix (a Florida supermarket) in Cincinnati :-).
Day 3 – Fighting Through All of the Poking and Prodding
More MRI, EKG, ophthalmology, and echocardiogram. Julian will be admitted this evening for some procedures tomorrow.
He is happy to receive packages from his friends and read their cards.
Day 4 – A Day of Procedures
In the hospital since last night. A full day for procedures (esophageal dilation, bone marrow aspiration, a biopsy of the mouth, and biopsy of the stomach) and hoping to be discharged tomorrow for some rest before his transplant.
Some of Julian’s procedures and testing will enable research to help future patients.
As you might expect, Julian feels both “happy and nervous.”
Day 5 – Reviewing the Transplant Schedule
Recovering from yesterday’s procedures and a GFR which measures the filtration rate for his kidneys. This video includes an overview of the 10-day schedule where Julian will undergo the necessary chemo treatments leading up to his transplant.
They also find out some positive information about the donor and Mayra thanks them (bring tissues).
Day 6 – Taking it Easy
Only 1 appointment today so they took it easy. Julian won’t be admitted into the hospital again until June 15, and then he will begin chemo treatments of Campath SQ followed by Fludarabine. His transplant, day zero, is scheduled for June 26.
We wish them a successful transplant and a lifetime of happiness. They deserve it!
Please join the registry. Do it for Julian. So many patients are waiting to find their matching cure.
join the registry
Written by: Bret Itskowitch