Family Feedback

Feedback from parents and caregivers inspires the work that we do and informs the programs and services that we offer.  Our children’s activities are designed for children to have fun in a safe and inclusive environment while parents connect with other parents who share similar experiences.  Here is what some of our parents have to say:

“I first became aware of the Matty Fund while searching on-line because I desperately needed support and wasn’t finding it.  Our daughter, Grace, was diagnosed with epilepsy at 11 months old and we were completely shocked because it was not prevalent in our family.  Our lives completely changed in a matter of minutes.  Matty’s 5K Run/Walk was our first Matty Fund event.  I cannot describe the feeling I felt that day when I finally connected to people that were living and breathing the same challenges we faced.  It was amazing and very emotional.  That was over five years ago.  Since then we have had many ups and downs, and the Matty Fund has been there through it all.  The Support Group has been a great resource for all of us.  I meet with other parents while Grace does arts and crafts with the other kids.  I’ll never forget the first time she saw another child take medication…she was like….wow….I’m not alone!  The Matty Fund has given me strength to raise my family just like everyone else and not focus so much on the epilepsy piece.  I am a different person now.  Today, I’m a Matty Fund volunteer, helping out at Camp Matty and taking part in Matty Hatty at Grace’s school….something I plan to do every year to raise awareness among children.  I am extremely grateful to Richard and Deb for taking their tragedy and turning it into something so positive for so many families…the Matty Fund is an extremely important part of my family’s life.”  -Michelle and Eric“Thank you all at the Matty Fund for putting together such a wonderful compilation of speakers at the Epilepsy Transition Conference for Parents and Caregivers.  Although, there is always some sadness when thinking about my daughter’s epilepsy…I am greatly aware that knowledge is power.  If I could be granted one wish it would be to make epilepsy go away forever.   Since I can’t do that for now, I can’t think of better people to have a link with to help us through challenging times.  I am so grateful to have the Matty Fund in our lives.”  – Angela and Sam

“This Thanksgiving I fervently wish to share what a blessing the Matty Fund has been for Lindsay and our family.  This past year and a half has been devastating for our family.  However, God always provides a ray of hope and for us that was our connection with the Matty Fund.  For Lindsay, it was such a revelation to realize that she wasn’t the only one with seizures and not the only one dealing with the ramifications.  She has gained purpose and self-esteem from volunteering.  For me, it has been such a blessing to connect with others who understand the struggles and small triumphs.  Her sister has been so much more supportive since volunteering at Camp Matty, and she now plans to study medication alternatives at URI next year!  You are inspirational and a blessing to the community.”  -Lisa

“Camp Matty was fabulous-it was a real boost to Jillian’s self-esteem.  She has had limited success at other day camps because there was not adequate support for her special needs or she was left out by the other campers.  Thanks so much for making her feel a part of the gang!”  -Karen

 

“Richard and Debbie, I want to thank you all at the Matty Fund for organizing such a great week at camp.  Seeing the kids outside of the office, smiling and playing so care free, is the most fun I have all year.  I think the kids all had a great time.” - Dr. John Gaitanis

 “Richard and Debbie are the MOST amazing people! There are no words enough to thank you for the love you share with ALL our kids…”thank you” truly seems trivial when appreciating you for the gracious way you give and give and give. I think I speak for all (at Camp Matty) when I say this.  THANK YOU!!!”  -Mikki      

Zacahry was so disappointed this morning because he was not going to camp! He can’t wait until next year!” – Christine

The following reflection by Dr. David Mandelbaum, Director of Child Neurology at Hasbro Children’s Hospital, conveys the spirit that drives Matty Fund programs and activities for children living with epilepsy.  Dr. Mandelbaum and his colleagues including Dr. John Gaitanis volunteer each year at Camp Matty.  He wrote:  “A colleague, Dr. David Treiman, once commented, the goal of treatment in epilepsy is that the only difference between a patient with epilepsy and everyone else, is that the patient with epilepsy takes a pill.  No matter what else they may be dealing with, when the children are riding a horse at Camp Matty, at least for those moments, that goal has been achieved.” -Dr. David Mandelbaum

 I just watched the video of Camp Matty on the website twice! I cried my eyes out the first time! What loving attention Matt Valletta put into this work! It really shows all the beautiful things about the camp, and especially the beauty of the children and of their interaction with the horses.  Many thanks to everyone involved!  -Annette