In the Angelman Syndrome community, we often get to hear heartwarming stories of the good in other people. Maybe it’s the perspective we gain from loving a child with special needs. Maybe our experiences do sometimes bring out the best in other people, giving them the opportunity to be more like the people they aspire to be. Whatever the reason, we’ve read of the friends that helped pay for a family to attend their first FAST Gala, the children’s group that has run a bake sale or created a video to support another child, the fundraisers to help pay the way of a child to participate in a clinical trial or to purchase a much-needed piece of medical equipment, dinners and golf tournaments and races that help fund FAST’s research mission. The international community of friends, family, acquaintances, work friends and strangers on the street who all voted in the Vivint contest to help FAST win $250,000.
I have such a friend and just such a story to share.
Let me go back to the beginning, through the mental snapshots in the photo album of our friendship.
My across-the-street neighbor, Natalie, and I were pregnant at the same time. When we met, she was in maternity overalls, and I was in what I envisioned was a professional-looking maternity suit. We delivered our boys two weeks apart in the early spring. We ordered food trays from the same restaurant for our respective family gatherings when our boys were 8 days old. Our husbands shared breastfeeding advice. Then our paths started to diverge.
I remember looking out of my bedroom window in the middle of the night. Her windows were dark, and I was sure her son was peacefully sleeping in his own crib, while my Ethan was screaming and awake. Ethan hadn’t really slept since he was born, and neither had I.
I remember sitting on her lawn with our husbands and our boys. Her infant son was none too pleased with the new sensation of the scratchy summer grass on his hands and feet sticking out of his onesie. I felt lucky that my Ethan was smiling and happy, enjoying the sensations and the company.
I remember being at a Fall religious service with our boys in their strollers. Her son was sitting forward, seeming eager as he grasped the bar and looked around. My Ethan was slouched back in the seat like a newborn. Hmm… should he be sitting better than that, I asked myself.
As Ethan started home therapies, I remember feeling like I had a revolving door to my home, and multiple cars parked in my driveway and on the street every day. (Another mom has joked of her visiting therapists that she was sure her neighbors suspected she was having affairs!) I knew Natalie’s son, instead, went to library time and play groups.
I have another son three years older than Ethan, who loves his little brother fiercely. The boys all attended each other’s birthday parties. As they got older, I remember climbing after Ethan in the ball pit and through the tunnels at the party gym, looking below at Natalie and the other mommies having adult time and eating pizza. I mused that I was having a better time, with an excuse to play despite the strain on my wrists and knees from crawling, but I felt lonely and different.
We compared notes about ear infections and feeding issues, childcare and balancing work and home.
Then Ethan received his diagnosis of Angelman Syndrome, and much of the next few years is more of a blur. Driving through tears, working, taking care of my children, more therapies, more sleep deprivation. Guilt and grief and having to push through because that’s what moms have to do no matter what.
Natalie and I compared notes about preschools. Her son was to go to the same school we had selected for my older son, a place we loved. Ethan could not attend that school because he was not potty trained, and there was another school that could better meet his needs, that we would grow quickly to love for our precious son. Yet she never looked at Ethan with pity; she knew him for the funny and mischievous person he was. She passed down to Ethan some of her son’s outgrown board and pop-up books, which was lovely and appreciated and just a little painful. Ethan ate only a few of the pages.
We shared a house at the beach, Ethan’s favorite place in the world. The younger boys tagged along with my older son’s brigade of friends, digging and building, although Ethan was best known for his demolition work .Natalie patiently listened to what I learned about Angelman Syndrome. She supported our fundraising efforts and walked in the ASF walks.
When FAST was born and I was invited to serve on the board, Natalie shared that her law firm had recently been part of a case in which there were monies remaining from a legal settlement that had been contributed to a non-profit health organization. When she visited a fundraiser held by The Creative Living Room, our local community arts organization that selected FAST as their annual charitable beneficiary, Natalie shared that she was aware of an opportunity about which FAST might want to learn more. I squealed like a little girl at the thought. Even then, I had no idea of the magnitude of the suggestion.
Natalie is a class action lawyer. When such a case results in a payment of damages, not all of the proceeds can successfully be distributed to all the members of the class. The remainder is contributed to charitable organizations that must be determined by the judge to be appropriate «stand ins» for the injured parties. With documentation from FAST submitted to the court, the individuals with Angelman Syndrome served by FAST were determined to be eligible. Natalie’s firm is not a stranger to charitable work. They have participated in numerous class actions in which residual funds were designated to deserving organizations. The firm’s name can be seen emblazoned on local Little League team shirts and in the programs of fundraising events. They support through leadership and by financial support our local Arc, a national organization that serves individuals with intellectual and developmental disabilities.
More than a year passed after my squeals. We learned FAST would, indeed, be receiving funds. Months passed and I tried (unsuccessfully) not to ask if it would really happen, when, … how much. I received a phone call from another law firm involved in the proceedings, to confirm the mailing address for FAST and to inquire if we were still in business as a charitable organization.
More weeks passed. Then my husband told me Natalie was in our front hallway with her family. He whispered that he thought it was about FAST. I came downstairs, and Natalie handed me an envelope. It was addressed to FAST. The first few words were promising, like a college acceptance letter. And behind the letter was a check. I laughed, I cried, I hugged. I hugged Natalie and her husband and her son. I hugged Natalie again. $190,693.74. One of the single largest gifts FAST has received to date. Meaning that, in 2012, with the anonymous gift of $250,000, nearly $150,000 from Eastside, $50,000 from Chase, and all the family-directed fundraising, FAST will far surpass 2011, the year of Vivint. Meaning that, in 2012, the non-governmental funding in the U.S. for Angelman Syndrome will nearly double.
Just as so often happens for the FAST organization, the funds could not have been received at a better time. They were used to support the 2012 FAST Summit Educational Strategy Seminar and Scientific Roundtable, appropriate since the monies were designated to FAST because our loved ones with AS are so dependent on computer technology for communication and education. These life-changing seminars had approximately 300 in attendance on-site and over 2,000 views on the live feed, with all attending in person or on line for free. All individuals interested in Angelman Syndrome, and those affected themselves, were welcome to attend. With the taping and dissemination of the sessions, we can safely say that this important and empowering information was and will be delivered to thousands of individuals looking to ensure individuals with Angelman Syndrome are able to reach their highest potential.
The designation of these funds also means that FAST can continue to provide educational and communication resources to the Angelman community in the future, without reaching into the funds donated to our primary mission of scientific research towards treatment and a cure. The impact of these sessions is already evident. Erin Sheldon’s presentation of her work in educational and community inclusion and the use of iPad and Smart Board technology to foster academic goals, literacy, and social interaction created palpable energy in the room. This meant the new realization for some, and the reinforcement for others, that our children can not only participate, but be welcomed by and make meaningful contributions to their communities and schools, especially if technological supports are offered appropriately. (Because of Erin’s influence and example, I personally credit her with my Ethan’s participation in Cub Scouts and my courage to try to change the mindsets within our district).
Erin and our beloved Mary-Louise Bertram presented in team fashion. Mary-Louise’s examples forced families, both of young children and of older adults, to quickly dispel their own beliefs that their own children aren’t ready for, or capable of, meaningful communication. Her respect for our children as learners and communicators encourages parents to take the steps necessary to ensure their children have access to autonomous communication systems. Even the «low tech» modalities (such as Pragmatic Organization Dynamic Display or P.O.D.D. books) require high-tech hardware and software to create, which can be intimidating. Mary-Louise has lifted the mystique and made us all braver; discussions are taking place all over the internet as parents support each other and Mary-Louise and Erin continue to offer their expert advice, to utilize technology on behalf of those with Angelman Syndrome. The recordings of the sessions, and the materials parents are beginning to acquire, can be used to further help to inform and convince the professionals who educate and support our children.
I tell you, just as I promised Natalie in my front hallway: FAST will use that money well. We will pinch its many (many) pennies, and make sure it goes a long way to forward FAST’s mission to improve the lives of our loved ones with Angelman Syndrome.
I am overwhelmed with gratitude to Natalie and her firm, Shepherd, Finkelman, Miller and Shah, LLP, for their hard work and their kindness toward FAST, and the impact this has already had and will continue to have on our community.
It truly was a beautiful, hopeful, bright day in my neighborhood, and the entire international neighborhood of families touched by Angelman Syndrome.
