Featured Fridays: Molly Bear Foundation
When I was pregnant with Macy, I was an active member of the Trisomy18.org message boards. There was a wealth of information on the site alone, much more than I ever learned in medical school or residency. The best part was the support that so many people provided for each other. I'm talking in past tense because I stopped visiting the site several months after Macy died--I just was having such a hard time dealing with my own grief and it was compounded by the other babies that I heard about dying too.
However, I've always been so grateful to the many (mostly) women who gave selflessly to help other women through their own difficult pregnancies. And I've always respected and admired that there are two different sections to the message boards--depending on the decisions you needed to make about your pregnancy. I had so many questions about the 'real world' experience with Trisomy 18, and this message board provided me with answers.
Through this site, I met Erin Brown. Erin's daughter, Molly, also had trisomy 18 and she lived into toddlerhood. Many babies with trisomy 18 are born still, or those who survive may not live to their first birthday. Erin shared so much of herself and her family to help other families with Trisomy 18. And I'm still so grateful for her guidance and strength.
See below for Erin's words about the Molly Bear Foundation, our FEATURED FRIDAY non-profit for today, this ninth Friday, which falls on Macy's actual birthday.
Molly of the Molly Bear Foundation. All photos courtesy of Erin Brown and posted with permission.
Molly Bear Foundation
Molly’s parents, Sean and Erin, learned she may have Trisomy 18 during a 20 week ultrasound. An amniocentesis confirmed this diagnosis and doctors told them that her condition was considered incompatible with life. Devastated and heartbroken do not begin to describe the intense emotions they felt hearing those words. Fortunately, her mom was able to connect with other moms who had children living with Trisomy 18. Although uncertain how much time they would have with their daughter, there was hope.
Molly Elizabeth Brown was born on August 11, 2006. She lived 19 months. During her short life, she possessed a personality, will, and grin that captured the hearts of those she met. If not for the good fortune of having met some very special people who had gone through similar experiences, Molly may never have had the chance to show that special something. Without the help and support of Molly’s family and friends, her parents may not have had the strength to care for Molly as they did.
In caring for Molly, insurance only went so far-her friends and family helped make up the difference by raising money and making personal donations. The Molly Bear Foundation, named in loving memory of Molly Elizabeth, is a community devoted to taking care of one another. The goal of the foundation is to pay it forward by providing supplemental financial assistance to families raising children with Trisomy 18.
The Molly Bear Foundation awards grants to children like C.R., who is 2 years old and has Trisomy 18. In October, the foundation was able to help purchase a specialized carriage system for her. They received the following message from her mom after they received the carriage,
“We are writing to thank you for the tremendous difference you have made in our daughter’s life. She recently got the carriage and it is wonderful for her. She spends many hours each day sitting in it. It enables her to have so much more social interaction, with her siblings and neighbors automatically playing and talking with her more since the seat height puts her at their eye level, and they can push her around, inside and out. She is spending so much more time outdoors and loving it! When the family sits around the table she is now able to sit with the rest of us! It is an incredible gift and we can't thank you enough.”
The Molly Bear Foundation continues to be humbled by the level of support they receive, as are the families they are able to help because of the generosity of others.
If you would like to learn more about the Molly Bear Foundation, you can visit their website here.
During the nine Fridays leading up to what would have been Macy's ninth birthday, we've been featuring various non-profit organizations. If you'd like to read about all of the organizations featured, click here.
I'm so amazed by the work being done by so many people--starting off at the grassroots level and making a difference every day. The Molly Bear Foundation is an amazing resource for so many families who have children with trisomy 18. What a great community and a great way of paying it forward. Every time I think about it, I'm just floored by the support of the trisomy 18 community and more. This is a great finale to our countdown.
Thank you, Erin for sharing Molly with us. xo
