Come February 2020, the US-based JAYJ Foundation will flag off a seminal sickle cell awareness campaign and newborn screening program in Haiti. JAYJ is named in memory of her three brothers who died from sickle cell complications. Founder/President Valentine Joseph, 50 is herself with the sickle cell trait and has a grownup daughter with HbSC.
In this interview with SICKLE CELL NEWS, Valentine recalls how, at the age of 10, her last surviving brother passed away in her arms, how she came to have a daughter with sickle cell (HbSC) and her rationale for establishing a charity devoted to helping families with SCD.
Did you take into consideration the genotype of your partner before marriage? Why, Why not?
YES. I learned about my sickle cell trait after I became engaged. I got married 4 years later. I left it all in God’s hands.
Age at diagnosis of your daughter with sickle cell.
My daughter Kim was diagnosed with HbSC at birth.
Do you have other family members/friends with sickle cell?
Yes! One of my nephews has SS. Another cousin of mine also had it and died at a very young age.
What event preceded her diagnosis with sickle cell anaemia?
Since her father and I already knew we carried the Sickle Cell trait (HbSC), we advised our doctors and in turn, all the necessary tests were performed as soon as she was born. Her diagnosis was confirmed two weeks after her birth. She had her first crisis at 3 months old.
Where was the diagnosis made?
Mammonides Hospital in Brooklyn, NY, USA
How did you cope with the challenges of raising a child with SCD?
It has not been easy at all, but my faith in God has kept me strong and so I kept going. I am grateful for each and every single day.
Has sickle cell affected your outlook on life? If ‘Yes’, How?
Absolutely! Going through this journey, I have become more compassionate, patient and caring. I am thankful that Kim has enjoyed some type of normalcy, which was not easy. But overall, it has been remarkable to see all that she has accomplished while dealing with all the ups and downs of her Sickle Cell Disease.
What do you think about sickle cell carriers getting married (to sickle cell carriers) if they knew of the risks to their offspring?
To be honest, I am a little bit torn about this. Seeing what my child and others go through with this disease breaks my heart. While I used to feel very guilty about my own choice then, especially when Kim was hospitalized, I have no regrets today. I would make the same exact decision that I made 27 years ago because Kim is without a doubt the best thing that have happened to me. This is truly a personal decision that potential parents have to weigh carefully.
Seeing what my child and others go through with this disease breaks my heart. While I used to feel very guilty about my own choice then, especially when Kim was hospitalized, I have no regrets today.
You had three brothers with sickle cell anaemia – how was it like growing up in such a scenario?
Unfortunately, I did not know my two older brothers as they died before I was born. My younger brother, Yoldy, died in my arms when he was 6 years old. Back then, we were living in Haiti and I used to hear that my brothers died from voodoo magic spells. It wasn’t until much later when my daughter Kim was diagnosed in the US and presented with the same exact symptoms that I realized it wasn’t so but rather they all died from Sickle Cell Disease.
How did your parents cope?
Whenever a parent loses a child, it’s excruciating to say the least. Imagine one that have lost 3 children. Both of my parents had immigrated to the US when my younger brother died. Due to their immigration status then, they were unable to attend his funeral. I honestly cannot imagine what they went through; to lose a child and yet being unable to be at his funeral. Personally, I have never spoken to them about my brothers’ deaths.
You were 10 years old when one of your brothers passed away in your arms – can you recall this occasion? Short term and long term, what effect did this have on you?
I can recall the moment vividly. It was an early evening as the sun was about to set and my brother was very sick with a fever and was in a lot of pain. I was holding him in my arms and he is groaning in pain. His joints were all swollen and eyes were closed. He then took his last breath and passed peacefully.
I cried for several days and was very sad….but I don’t remember it being lingering though. Over the years, I have played this occasion in my head numerous times. While it continues to affect me, it also gives me strength to continue my current work with the Foundation. I recently came across one of his pictures and it has made me feel extremely reconnected to him and this brings me much joy.
I would like to see a total eradication of this dreadful disease
JAYJ FOUNDATION
When and why did you establish the JAYJ Foundation?
The Foundation was established in 2014. The letters J-A-Y-J are the initials for all my brothers who died from Sickle Cell Disease and the last J represents our last name, Joseph.
- J – Jean
- A – Anderson
- Y – Yoldy
- J – JOSEPH
How is JAYJ funded?
First through me, close friends and family members; we also have some private donations and some corporate in-kind donations. We do an annual fundraising event in February.
What are the challenges you have faced since establishing the Foundation and how have you been able to surmount those challenges?
Raising the necessary money to fund our activities. Also, the lack of infrastructure in Haiti where we do our mission work has proven to be extremely challenging.
What are your achievements so far?
We have provided for over 600 children in Haiti and provided over 600 care kits to local women. We have distributed over 500 backpacks and school supplies. We have awarded 26 full-tuition scholarships and provided Sickle Cell medications to patients in Haiti. In February 2020, we will launch our Sickle Cell Initiative where we will provide newborn screening and awareness.
What would you like to see happen to SCD treatment/management/research in the next 20 years?
I would like to see a total eradication of this dreadful disease
For more on the work of JAYJ Foundation, please visit www.jayjfoundation.org