Update 48 Aftermath of “Songs for Sara Benefit Concert and it’s Back Story

Someone asked us how we felt after the concert…

well excited, elated, also exhausted, overwhelmed, relieved and later when we started to hear from so many people…. grateful beyond belief, thrilled and sooooo loved. We were also very, very touched by the beautiful, cards, notes, stories, stuffed animals, and heartfelt donations. We received donations of everything from $2 to $1000. We received a $15 donation from a group of monks vowed to poverty, some gifts from folks who said this was their Christmas gift in lieu of gifts to others, contributions from friends we haven’t heard from in 20 years, but most from folks we’ve never met who were simply moved by Sara Ann’s story.


We had over 225 people attend the concert. Channel 6 Action News visited and played portions of the concert and some brief interviews of us all day Sunday Nov. 29th. So many more folks saw at least a part of it. Musical selections from the concert can still be viewed at www.youtube.com/melissperrysoprano

The show came off without a hitch…

No one would have known that Donald had been up all night with a stomach virus the night before. He was still looking pretty green during rehearsal but he didn’t complain once. Many singers would have cancelled. He still jumped right in giving a great pre-show talk about American’s Got Talent to about 40 people. He was the consummate professional. Everyone just loved his act and he was a real prince helping me out when I was overcome.

And no one knew…

that I’d just gotten out of the hospital with Sara 2 days before. That Dad had had walking viral pneumonia for 4 weeks, which he’d given to Sara and me and that I’d had to sing the concert on a double dose of steroids. I was still hoarse during the rehearsal and called my doctor at 5 pm. He said “is this a one time thing?” “Yes.” “Ok, head to the pharmacy, I’m sending you a 2nd dose. We’re cutting it close but if you take them immediately, you might just make it.” Got to the theater and News 6 was waiting. After the unexpected interview, I had to throw on my dress during the first quarter of the program. I was horrified that there was no outlet to run my curling iron, but Carol from Verenique who donated the dresses, jumped in with her runway skill and threw my hair up in French chignon in minutes. I wouldn’t have had a clue. I had no time to warm up, so I totally trusted my doctor…not something I’m good at. It felt like I was about to jump in a vat of fire. I gingerly sang into the first few notes, realized the hoarseness was gone and I was home free! I never even got to meet the Stokkings who I heard were stellar. They’ve offered to play their part of the concert in their home for us in January so we can meet and also hear them!

Behind the scenes,

so many people participated in making it a successful event. The principal of the school paid the janitor out of his own pocket and didn’t charge us anything. Mayor Maley of Collingswood sent a donation from his law firm for the flyers. And the Collingswood Cares Special Needs Families program run by Mayor Maley and his wife Diane, sent us a large donation of $1000. “The Braswellians” Donald’s fan club that flew in from all over the country, put him up in a hotel, paid for his meals, and ferried him around. Saturday they marched in the Collingswood Christmas parade giving out flyers and sold tickets at the Pop Shop. A multitude of area businesses gave prizes for the Chinese style auction that Karen Dante MD almost single handedly put together. The Haddon Township High School asked for 20 volunteers who all showed up promptly and did a great job. The stage crew was all high school students with the exception of local pro stage manager Jen Staffenberg who also gave her time freely. The kids did a super job and were willing to be creative at working out all the last minute bugs. Also our pre-show volunteer leaders and helpers Maggie Mustico, Maria Greendyke , the Flamporis’s, the Rolands, Sharon and Cory, Norma and Jackie Schleckner, head volunteer Louise Escher did a truly spectacular job.  It all came off without a hitch becasue of them.

Crashing….Afterwards we let down

for a few days, from the big push to pull it off in only 6 weeks. Hugh went to the post office Wednesday and discovered 56 envelopes and a slip saying there was a package. Two days later he went back to get the package but it turned out it was another bunch of letters, too many to put in the box, about 150 more. We were amazed. This was definitely a result of the article. Now there have been over 300 letters, with donations and many beautiful notes, cards, and sometimes very moving stories. After having felt so isolated for the last 6 years while going through all this, it’s quite a contrast to feel surrounded by the arms of a loving community. Many of the stories were from others who had or are caretaking for their loved ones. We have hope now. I believe that being aided by so many new friends we will some how find our way.

Other things that have happened since the concert

First, we were introduced to Tamilyn Jones who in her twenties also has many special needs. She is a computer whiz so she did a lot of PR for the concert and was able to make it all the way from Ocean City. She was delighted to actually see Sara Ann and offered to create a Facebook page for her. It should be up this week. Second, we were contacted by the folks who make the Quadriciser that we are so desperate for her to have. It would improve her breathing, which would create less secretions, which would help her swallow. It also would exercise her body in the “walking” pattern, which would strengthen her trunk and help her neurologically. Her PT believes that if she had a stronger trunk she could learn to stand, walk and use her arms. The last time she used the Quadriciser, she was able to reach with her arm and lift her shoulder in the crawl for the first time. The owners of the company are trying to find ways to help us raise funds so she can get this machine. They called to say they may have a possible donor interested in helping several children. Third, we now have an official group of volunteers called “The Friends of Sara”. This group not only helped with the concert but is already meeting to plan the 2010 fundraisers.

 Is this God’s grace or what? It was a tremendous success…

The Haddon Fortnitely sponsored the “Songs for Sara” concert and literally bent over backwards to help us in every way, especially president Barbara Leap. Between the concert and the donations sent in after the Inquirer article, we made a little over $20,000 total.

How can we ever say our heartfelt thank you to so many?

Our family would like to humbly and gratefully thank all of the donors who responded to our need. We have been unable to answer the letters yet, because Sara has been sick with ear infections and needing a lot of extra care lately, which cuts into our time. However, we will indeed get to it. The money will help us to buy some time to get on our feet, get our insurance in order and continue looking for a corporate sponsor. Our immediate plans include getting Sara Ann back into hyperbaric oxygen treatments in January and returning to weekly swallowing therapy.

The quintessential Sara Ann…

She is really excited about Christmas this year because she “gets” Santa. She only wants us to read her Santa books. She and her OT wrote him a letter asking for “maracas, dollies and more books”. She’s working on a ceramic surprise with her teacher, compliments of shop “All Fired Up” for mom and dad. Then the teacher helped her make her own wrapping paper. She asked her if she wanted to put trees or squares or circles on it. What did she choose? Hearts…the whole thing is covered with her own hand drawn hearts. I will never throw that paper away as long as I live!

If anyone would still like to help,

we are selling children’s books “One Big Hug” and “Who’s not Asleep?” from Mamoo House Books for Kids written and illustrated by my mother Shirley Hillard alias “Mamoo”. She wrote “Who’s not Asleep?” when Sara Ann was in the NICU in an effort to help us. The dedication reads, “For Sara, who is a miracle in every way.” Books are sold locally at The Book Trader and Espressit Coffee Shop. Any books bought over the internet from www.mamoohouse.com, 50% of the price will go into Sara’s medical trust and the other 50% will help support the business which someday we hope will support our family. There are also 30 Sara Ann Cans around Collingswood and Haddon Township. Donations are still being gratefully received through Friends of Sara PO Box 172 Collingswood, NJ 08108. Checks should be made out to “Friends of Sara”. Paypal is also available her website www.friendsofsara.com

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