Our dear friend Nerina Rustomji writes in…
Under the canopy of trees in Riverside Park overlooking the Hudson River, the energetic crowd was ready to get going. There in the midst was our Yasmin and Cyrus Pavri with their children Porus and Farah and their puppy Rustom too! The Hemophiliac Walk in New York City is not just any walk. It is a walk that pulsates with fun, excitement, and community. More than anything else, it is a moment where we can join the Pavris as they show us what is means to live an active life with purpose, meaning, and zest.
Porus’ polite, caring manner is bolstered by a fierce determination. Since the second day after his birth, he has managed living with hemophilia, which is a rare chronic bleeding disorder in which one or more factors of the blood are missing. This makes clotting slow. Or in his case, the blood does not clot at all. Just as children go through regular cough and colds while growing up, Porus went through elbow, knee and ankle bleeds on a regular basis. Getting a bleed in the joint is very painful, and the damage done by every bleed to the joint is irreversible. Porus also has the complications of the presence of an inhibitor. Inhibitors are antibodies and are the worst complication that can happen to a person with a bleeding disorder.
Just as the Pavri family was dealing with the inhibitor crisis, the New York City Hemophilia Chapter (NYCHC) offered help and support. The Pavris thought it was time to give back, and they started their team “Team Champion” in NYCHC’s annual Hemophilia Walk. Over the past eight years, with the help of very generous family and friends, they have raised over $45,000. Raising money is not the only way that they contribute. They pour hours of time into the walk, which takes a year of planning. Some years, Yasmin is setting up the walk at 7 am. And the morning after the walk Yasmin is already at work planning the next one!
At this year’s walk, Porus was awarded a trophy for the “Top Youth Fundraiser.” But he is not the only fundraiser. Farah started her own Hemophilia Walk in her hometown of Allendale, New Jersey three years ago when she was only an eighth grader. Because of her initiative, she was honored with a certificate from the New York Hemophilia Chapter last year. She even received national recognition at the National Hemophilia Foundation’s Annual Meeting. This was an amazing honor for a 15 year old. This past April, the third year of hosting the walk in Allendale, she raised $6,000.
Given the success of the two walks – in Allendale and New York City – we salute Yasmin, Cyrus, and their wonderful children Porus and Farah. And next year, mark the hemophilia walks on your calendar. Farah’s walk is in April, and the New York City walk is on the first Sunday in June. It is fun! You will learn a great deal about hemophilia, but more importantly, be part of a larger community that supports the Pavri family!
Yasmin, Cyrus, Farah and Porus Pavri are active members of the Zoroastrian Association of Greater New York and are active in the ZAGNY Community, where Cyrus serves as the Treasurer on the ZAGNY Board
First recognized in 1953 in patients who experienced severe bleeding after dental extractions. Its incidence is estimated at 1 in 100,000 in the general population. In Israel, FXI deficiency occurs in up to 8% of Ashkenazi Jews because of INTERMARRIAGE. In the Parsi population, INTERMARRIAGE is recommended by their Zoroastrian customs, though not one Parsi scholar can point to the original exact doctrine demanding this crippling (physical and mental) situation. The Jewish population, being informed of their crisis, began immediately to soften their marriage restrictions so that the diseases, both mental and physical, caused by combined recessive genes, would have opportunity to reconcile, strengthen, and improve the general health of the population.
Severe FXI deficiency is inherited in an autosomal recessive pattern, meaning both parents must carry the mutated gene in order for their children to be affected. However, only one parent having the recessive gene can pass that gene to offspring (unaffected) who can combine with another in their generation, causing a manifestation of a myriad of diseases, hemophilia being only one.
Instead of glorifying such calamities on each wave of new Parsi infants/children, then the next, and next generations, why cannot the physicians, scholars, scientists and Zoroastrian leaders take on this crisis which is causing a pattern of extinction among the Parsis, turn it around, then go forward with pride instead of having parades praising affected families and congresses where Parsi unmarried youth can meet, marry, then bring other generational defective waves within this tiny gene pool. Is anyone listening????
The Zoroastrian/Parsi communities have such a rich history to share with mankind. Soon, there will be none living to share it.
First recognized in 1953 in patients who experienced severe bleeding after dental extractions. Its incidence is estimated at 1 in 100,000 in the general population. In Israel, FXI deficiency occurs in up to 8% of Ashkenazi Jews because of INTERMARRIAGE. In the Parsi population, INTERMARRIAGE is recommended by their Zoroastrian customs, though not one Parsi scholar can point to the original exact doctrine demanding this crippling (physical and mental) situation. The Jewish population, being informed of their crisis, began immediately to soften their marriage restrictions so that the diseases, both mental and physical, caused by combined recessive genes, would have opportunity to reconcile, strengthen, and improve the general health of the population.
Severe FXI deficiency is inherited in an autosomal recessive pattern, meaning both parents must carry the mutated gene in order for their children to be affected. However, only one parent having the recessive gene can pass that gene to offspring (unaffected) who can combine with another in their generation, causing a manifestation of a myriad of diseases, hemophilia being only one.
Instead of glorifying such calamities on each wave of new Parsi infants/children, then the next, and next generations, why cannot the physicians, scholars, scientists and Zoroastrian leaders take on this crisis which is causing a pattern of extinction among the Parsis, turn it around, then go forward with pride instead of having parades praising affected families and congresses where Parsi unmarried youth can meet, marry, then bring other generational defective waves within this tiny gene pool. Is anyone listening????
The Zoroastrian/Parsi communities have such a rich history to share with mankind. Soon, there will be none living to share it.