Sunday, September 7, 2014



Temecula, CA – When you become a story while covering a story, it’s pretty obvious that you’re not looking
back, only straight ahead. It isn’t that I don’t wonder the latest on Autumnwood and the Toyota battery fight, it’s just there seems no time for resolution. Well not this time or this story. The Calendar presents the concluding chapter to a story first posted by the Valley News then later expounded on here about my friend, Basil Maqbool, the druggist at Vail Ranch Pharmacy on highway 79 South. The conclusion, in his own words.

“My youngest son, Nomaan [‘Nomi’], suffers from a rare genetic disorder known as Leber's Congenital Amaurosis, due to a mutation in the gene RPE65, which causes blindness. He began a clinical trial to try and restore his vision. This is our account of the process finish.

It's been almost a year since Nomaan was treated. I haven't posted as often as I would have liked to in recent months. Life, as is always the case, has kept me quite busy. Between work, family, school, etc., we have all had our hands full.

This year, we have only had two visits to CHOP.  I received an email this week, finalizing our plans for our next visit. In November, we will have our final visit of 2014. After that time, we will have annual visits only.

This reminded me of all of you, our readers, and that I must not only give you an update, but also bring this story to a close.

This blog has reached so many people, and has been read almost 10,000 times as I write this. I never imagined how well this would be received. It’s overwhelming. I recently met a total stranger at a gathering who said that she not only read our blog, but was also touched by it.

With that being said, this will be my final post. 

So much has changed for our family, for the better of course, as a result of this adventure.

Someone once told me, that in every challenge in life, God hides blessings for those who stay positive and faithful throughout the course of their struggles. When Nomi was first diagnosed, we were so devastated, that we couldn't see the hidden blessings that were soon to be bestowed upon us.

The greatest benefits have come to Nomi. He has blossomed into a young boy who is so much more confident and self reliant. He is doing better in school, and can handle tasks that he used to need assistance with, all on his own. He has become more social, more outgoing, and has made new friends.

As a family, the frequent trips to Philadelphia have allowed us the opportunity to reconnect with old friends, spend time with family that we didn't get to see much, and make new friends.

We have found new sources of inspiration and role models for our son, individuals who have shown us that nothing is beyond his reach, and there is no limitation that he can't overcome.

We have been able to experience an entire new city, and see another part of the country, immersing ourselves into the local culture and landscape.

Of course, the frequent flier miles are nice too. :)

We are truly honored and blessed.

What we will miss most, is the team at CHOP, the amazing people who made all of this possible for Nomi; Dr. Maguire, Dr. Bennet, Dr. Dan, Kathy, Sarah, and Dominique.

As Nomaan's parents, this has motivated us to give back. WE try to show our support for others, through supporting other fund raising efforts, or by simply sharing our story. Research works. All it needs is support.

To all of our readers out there, I implore you to donate. We are personally biased towards the research being done in gene therapy and LCA (you can find links here on our blog). Regardless of this, whatever charity you choose, it’s important that you donate time, money, or knowledge. It doesn't have to be much. A little can go a long way. You may not realize it today, but the donations you make will impact the lives of people around the world like Nomi. It’s through the efforts of those who can give and the people who work hard to make dreams a reality that children like our son have new opportunities presented to them.

Though Nomi's story has been told, his journey has not ended. He will continue to have challenges in his life due to his vision. These challenges are now things he knows he can overcome, and become the man he wants to be.

We may no longer be updating this blog, but we will always be available to anyone who wants information. Feel free to reach out via email or Facebook.

Thanks for sharing in our joy and following our son’s progress. We will forever be grateful to all of you for your love, support, and prayers.

Good bye, good luck, and God bless you all."

With Love and Gratitude,
Basil, Beenish, Raafay, And Nomaan Maqbool.

No comments:

Post a Comment