My Nonprofit Reviews
carriedaggett
Review for Little Bit Therapeutic Riding Center, Redmond, WA, USA
My daughter Kate was born with a rare chromosome disorder called 1p36 Deletion Syndrome that has caused multiple health and development challenges. Kate has extremely low muscle tone which means that simple milestones like sitting up on her own seemed unattainable. Kate started attending Little Bit when she was 4 years old. Every week we would drive out to the facility so that she could be lifted onto the horse by her physical therapist Steve and then taken around the arena or the trail outside. It was a thrill for me to see her up on the horse. My sweet girl who couldn't walk or talk was riding a horse! But the true benefit was yet to come. Last December, Kate gave me the best Christmas gift ever. She sat up on her own and kept on doing it over and over! It took some time but the consistent work on the horse with a skilled therapist and wonderful volunteers to help greatly increased her trunk strength and gave her the motivation to do what I never thought she would. I still cannot keep myself from being thrilled every time I turn around and find her sitting up. I give all the credit to Little Bit. We are so lucky to have this amazing organization in our area. The staff, the volunteers and of course the horses are wonderful and, quite frankly, they are miracle workers as well!
More Feedback
I've personally experienced the results of this organization in...
the progress my daughter has made. Her strength has greatly increased since starting hippotherapy.
If I had to make changes to this organization, I would...
increase its capacity so that no child has to be placed on a waiting list before they can start receiving the benefits of horse centered therapy!
What I've enjoyed the most about my experience with this nonprofit is...
that its a place where my daughter, who often has to sit out of activities that other children get to do, is participating, appreciated and welcomed.
The kinds of staff and volunteers that I met were...
helpful, cheerful and dedicated to the clients they serve.
If this organization had 10 million bucks, it could...
serve more disabled children and adults with a larger facility and more staff.
Ways to make it better...
I have no complaints.
One thing I'd also say is that...
We have been given financial help by Little Bit many times when the tuition was more than we could afford. That has been a godsend when times were tough. I'm so thankful that through generous donations of others, my daughter could continue with therapy.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
Review for 1p36 Deletion Support & Awareness, Bend, OR, USA
Being a parent to a 1p36 child brings a multitude of challenges that the parent of a typical child never has to consider. It can mean lengthy hospital stays, surgeries for heart, digestive or orthopedic complications, specialist appointments and more specialist appointments, a variety of medicines mulitple times a day, pediatric therapists to visit or that that visit you, education plans and meetings, specialized equipment for seating, mobility and sleeping, 24/7 seizure watch, oxygen monitors, feeding tubes, and diapers for a child well beyond potty training age. A parent of a 1p36 child experiences all or some of these things. The hardship is compounded when parents can't find support or the resources they need or simply connect with another person who relates with what they are going through. My daughter Kate, now 7, was diagnosed with 1p36 Deletion Syndrome at 18 months of age. Even before getting the diagnosis, we knew that she had some sort of genetic disorder due to her significant health and development issues but the doctors could not put their finger on it. Once we finally did have the diagnosis, we found that there was no-where to turn for support and guidence regarding 1p36 Deletion Syndrome Six months after getting the diagnosis, I finally happened upon a Yahoo! message board for 1p36 parents and I was so relieved to finally find someone who shared the same experiences as my family. It was because of the parents who started that message board (and others who organized our first conference or designed special 1p36 web sites) that 1p36 Deletion Syndrome Support & Awareness exists. It is essential that parents and caregivers of 1p36 children are able to connect with others and that the most recent and relevent information regarding the syndrome is available to them and to medical providers. Early diagnosis means that doctors and parents have new insight into a child's health issues. That insight can mean better outcomes to the most dangerous of 1p36 Deletion Syndrome's health complications. I believe strongly in the mission of this organization and know that with your help, we can make sure that all children with 1p36 Deletion Syndrome are diagnosed early and that their families get the help they need.
More Feedback
I've personally experienced the results of this organization in...
the relief I felt that my family is not alone. Having a child with special needs can be very alienating. The support from your family and friends is helpful but finding other parents dealing with same diagnosis is comforting and enlightening.
If I had to make changes to this organization, I would...
increase funding and scope of operations. In order to reach the goal of providing support & education to all 1p36 families and to educate the medical community so that no child goes undiagnosed, growth and funding is essential. We can make a difference!
What I've enjoyed the most about my experience with this nonprofit is...
meeting 1p36 families and their beautiful children. It is an amazing thing to have that connection. A 1p36 DSA conference is like a giant family reunion with a bunch of people you've never met. Imagine the relief when you know you are not alone anymore
The kinds of staff and volunteers that I met were...
so dedicated to the mission of 1p36 Deletion Support & Awareness. Their desire to truly make a difference for these children and their families shows in their enthusiasm and hard work.
If this organization had 10 million bucks, it could...
insure that no 1p36 child goes undiagnosed and that all 1p36 families have access to information and support.
Ways to make it better...
My experience with this organization and the people involved could not be any better but the future holds even better experiences!
In my opinion, the biggest challenges facing this organization are...
gaining the funding needed to support the organization's future programs.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
