What Families Are Saying | Overview
Here’s what some of our participants and their caregivers are saying about the PPRC.
Advice for caregivers
- “Buy in! You have worked through so many more complex things before you even step into the PPRC. Everyone’s story is different, but all seem to get to a place of “hopelessness.” You are in the right place now. These professionals know how to help. If you fully invest and focus on this, you gain so much. You will see your old child again. But, it does take trust, time, and commitment to move!"
- “Trust the process. So many treatments have been done to our kids that have failed. It is hard to take the risk that this might fail as well. It is overwhelming at first, but it is the child who is taking control of their treatment. Trust that the PPRC knows what they are doing and that your child can do this.”
- “I am understanding more and more what the PPRC has done for [my child]. We have gone from a daughter who couldn't attend more than a couple hours of school, participated in no physical activity, took naps throughout the day, was missing out on learning to drive and couldn't sit in the car long enough for a trip to the Cape, to a daughter who is ready to go to school before I even get out of bed, just about ready to take her driving test, and coming home from soccer red and sweaty! I also see now how much we have learned from you guys. I am becoming more aware of how stuck we also were in “all or nothing” thinking — that if she has pain, then we are nowhere. I am starting to understand that the pain is there and part of [my child] but is almost something that drives her now. I'm not saying it's a good thing - in any way - but it is no longer a deal-breaker- She is still [my child]! So — thank you! It's taking me some time to see the whole picture of what you do at the PPRC. I'm sure I will continue to understand new aspects. I'm sure you already know this, but what you do there is extremely meaningful and life-changing.”
- “We are forever grateful for all of you and everything that you’ve done for [our child] and our family. We were reflecting on our past year and we are so happy with how far he has come. Last year [our son] was inpatient and he was in such a bad place physically and mentally. This year he’s so much better! He fully dresses, bathes, & walks the best that he can. He hasn’t missed one class and he’s volunteering for every National Junior Honor Society event that he can. He even ran for President of NJHS (he came in a very close second). We know he has much more to go and we wish it was going faster but we recognize all the progress he’s made. The PPRC has given us hope and you’ve given us our son back.”
- “Thank you all again for taking time out to catch up with [my son] and myself. It was amazing seeing you all again, as your treatment protocol holds a very special place in our hearts every time we witness its success in him... His success today stems from the amazing work everyone at the PPRC has done for him and with us, so he’s truly a success story and for that we will always be super grateful!”
- “I’ll admit I was initially afraid [my daughter] would struggle to maintain the gains she made in Boston, but I’m no longer concerned. She’s stepped up to the plate, taking responsibility for what she needs to do to stay well, and I’m confident she’ll continue to do so. It’s time to let this storyline go. The PPRC taught me that. Time to choose wellness over disability for her, for me, for all of us.”
- “I often think of you guys and I rarely write. Had to take a moment to say thank you, again, for returning [my daughter] to her childhood. She is jumping, climbing, tippy-toeing and all the other great stuff an 11-year-old does. You guys are life changes with the biggest hearts. My heart cannot thank you guys enough and I am hoping that maybe this letter might show the slightest drop of gratitude that I have for you all. You are all an awesome team.”
- “It's so hard for me to believe that it has been almost eight years since I was [at the PPRC]! Recently, I've been thinking back on my time in Waltham with you guys, and I couldn't go another day without reaching out and saying thank you from the bottom of my heart for the holistic medical care I received while here. I'm a senior at Samford University and will graduate with my BSN with an emphasis in pediatrics. Each and every day I find myself teaching patients and families coping strategies I learned during my time at the PPRC. Having laid in a hospital bed and having been pushed to my limits during a long day of PT has allowed me to relate to patients in ways I could have never imagined. I'm happy to say that my CRPS is still very well managed- even with being on my feet for 12-hour shifts! I still implement many coping strategies for pain and even some of those trusted HEP exercises to deal with flare-ups. I have very little pain most days, am fully functional, and so, so proud to say that there has not been a day since the PPRC that CRPS has held me back from pursuing my dreams. Thank you all from the bottom of my heart for the care I received there! I am honored to be a PPRC graduate. Even now at 22, I still have my stress ball I received at graduation on my desk. It's a daily reminder of what I've conquered and that through CRPS I've experienced a lot of pain and suffering for sure, but I've also found my passion and have a story to share that one day just might change a child's life!"