“I want to make the video of the marrow. The one that is going to help many people,” Joaquin Sabor Grosso, 8, told his parents this week, Pablo de la Cruz and Marina. In the middle of quarantine to prevent the spread of COVID-19 and to take advantage of free time, Joaquín, who lives in Boedo and goes to third grade, asked his dad to open a
. They posted videos of magic and little games, but Pablo proposed to his son something different: to tell his story.
Joaquin was one and a half years old when he was diagnosed with type 1 mucopolysaccharidosis, a rare disease also known as Hurler’s syndrome. It was December 30, 2013.
Getting a bone marrow transplant, as soon as possible, was essential for his treatment
. “We were very lucky. Three months later they told us that they had found a donor in the world registry. His name is Reuben Proctor, he lives in the United States and at that time he was 26 years old,” says Pablo. In his honor, “Proctor” was the name that Joaquín chose for his YouTube channel. “Donating bone marrow is very easy and very important. It is like having blood drawn. It is one of the few donations in which you save a life, in life.
And from one day to the next, you become a hero
“says the boy in his last video.
Joaquín’s awareness message came from good news. Yesterday, the Incucai reported that donor cells from Israel, Brazil and Germany were transferred to our country, which
four Argentines awaiting a bone marrow transplant will benefit
. Usually, the transfer of donor cells from abroad is carried out on passenger flights with the participation of specialized personnel; however, since the application of the preventive measures of social isolation by COVID-19, due to the suspension of commercial flights, different options were analyzed to continue guaranteeing these transfers.
Finally, the alternative was chosen so that pilots and crew of some cargo flights could bring the cells with them, in a modality called
care of crew
(under the care of the crew personnel). The other way that is being used, as reported by the Incucai, is cryopreservation in which cells are frozen with a special solution at -196 ° and transported in tanks with liquid nitrogen, which ensure they maintain the proper temperature.
Like Joaquín, hundreds of people diagnosed with hematological diseases must be treated each year in our country with a Hematopoietic Progenitor Cell (CPH) transplant. However,
only 25% of these patients have a compatible donor in their family group
. The remaining 75% must resort to an unrelated one, through the world’s donor registries, including the Incucai National CPH Registry, which is part of the World Marrow Donor Association (WMDA) international network, which has more than 37,000,000 donors in 63 countries.
The donation takes place only when the genetic code of the patient and the donor are close to 100% compatibility, something difficult, since people have significant genetic variations. Therefore, the more registered donors there are, the greater the chances of compatibility.
According to the Incucai,
three out of four
do not have a compatible marrow donor
in your family. Pablo says that Joaquín’s disease is characterized by the boys having bone, respiratory, coronary and cardiac problems, among others, and they have a reduced life expectancy. The transplant is, in many cases, essential to improve its prognosis: “It can be done up to two and a half years only, because afterwards the disease takes over the central nervous system and is irreversible,” says Pablo, adding that Hurler’s syndrome is usually occur at one birth every 100,000 or 120,000.
On June 14, 2014 Joaquín was transplanted.
A year later, via Skype, he met his donor.
“The protocol indicates that a year has to pass so that the data can be released and, in case both parties want it, they can get to know each other,” says Pablo.
In Argentina, since 2003 -year in which the Incuca National CPH Registry was created- the health system guarantees that all patients who need to have a bone marrow transplant can be treated without the need to travel abroad.
Since then, 1,203 people have accessed a transplant with donors outside their family group
; and, in the same period, the registry of our country contributed 231 donors: 140 for Argentine patients and 91 for foreigners.
There are 284,487 people registered as bone marrow donors in the country. “There are many children who are waiting for their donor. I want this video to be worldwide and to be highly supported,” says Joaquín.
From the Incucai they detailed that
the four transplants that will be performed in these days are added to the 22 performed so far this year with donors from abroad
. Likewise, there were 21 donors from the National Registry: 9 were for Argentine patients and 12 for foreign patients.
Pablo says that Joaquín today “is great, very healthy”. The objective of the video they made with Joaquín (Pablo was in charge of filming and editing) has only one objective: to destroy myths and continue reporting on the importance of donating marrow. “Reuben Proctor, thank you, you saved my life,” concludes Joaquín looking at the camera.
What you need to know before donating
- Bone marrow donation consists of two instances:
registration and donation
. In the first instance you donate blood and you sign up. In the second, you are invited to donate cells.
- Once registered, the donor is only contacted again
if it is compatible
with a patient requiring a Hematopoietic Progenitor Cell (CPH) transplant. Donor and recipient must be 100% compatible.
- When the genetic code of a donor enrolled in the Registry matches that of a patient who needs a CPH transplant anywhere in the world when searching, the Registry contacts the donor to
confirm your decision and manage the donation