I am humbly asking you to make a small donation in my sons name (Noah Nabeel Sahhar) to a charity that means so much to me. I have three objectives: One, raise awareness that this organization exists. I didn’t know about this when we got Noah’s diagnosis. It would have helped tremendously. Two, keep my sons memory alive. I will never stop talking about him. I want his name to be spoken and read and written for years and years. Three, to help others who find themselves in such a scary situation. Our story made short (ish) When we received Noah’s diagnosis of lower urinary tract obstruction (LUTO) we had no idea such a problem could even exist. We had no idea why our doctors kept mentioning UCSF. We didn’t know we would have to travel for fetal surgery or that it was even possible. We felt very desperate and very alone. Because it’s so rare, our doctors here had little information to give us. We poured over the internet trying to find medically sound research articles on what we were dealing with. We felt so alone. Peter and I ended up doing enough research to figure out UCSF wasn’t our only option. We called all 8 hospitals in the United States (on our own) that offer the surgery that Noah needed. This took hours on hours and days and days. The amount of emails, faxes, calls, tears, and explaining and reexplaining was emotionally exhausting. It was tedious work keeping everything organized and weighing our options for each hospital. We had to learn as we went, and thank God I have a medical background or we would have been truly lost. When we decided on mayo in Rochester we had to book last minute plane tickets, rent a car for an unknown amount of time and book a hotel. We were in Rochester for two weeks. It was very expensive. Luckily, we had the means to pay for it. Can you imagine the families who don’t? This organization helps families with fetal anomalies of all different kinds. It was founded by parents who went thru it. They give support to families during diagnosis including working with them and medical treatment centers. This would have been invaluable to us had we known it was available. They also offer emergency need based travel grants to families who can not afford it. They raise awareness and fund a yearly research grant. It is purely volunteer based (I myself will begin volunteering in late August) and 100% of donations go to these programs. Nobody who works there gets paid. This was founded 12 years ago. Did you know that 200 babies die every day from fetal anomalies/syndrome? That is a HUGE number. One I’d like to see go down. I have met a few woman since I gave birth to Noah who have also lost their babies to fetal anomalies. This isn’t just for Noah. It’s for baby Maya, baby Mathew, and baby Ace too. And for all the babies both past and future who deserve to be celebrated, and honored. Please consider donating if you have the means. Even one dollar would help. Thank you and bless you all!
