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Hope and Healing

Find courage, strength, and hope in the stories of amazing families

aconn1986
Oct 15

As an infant, Jordyn developed on the tail end of the milestone check list. By her first birthday, though, she was still only cruising furniture. Her pediatrician said not to worry - that she wasn't
wrwoodar
Jul 20

My son will be 3 yo in october and was diagnosed with spastic diplegia/CP about 2 months ago. Peds neuro ordered MRI to look for signs of CP and there turned out to be white matter injury worrisome f
Maria Kefalas
Jan 2

There was a rather heated discussion on one of the other most popular leukodystrophy forums. A recently diagnosed father had written in to offer a critique of that page and the leukodystrophy communi
Maria Kefalas
Jul 15, 2018

Watch the local news story about how some young people are using a lemonade stand to fight leukodystrophy. http://connecticut.news12.com/Clip/14488292/girls-lemonade-stand-raises-money-for-friend-wi
Murad Mamedov
Feb 26, 2018

Hi everyone! I have a 2 year old baby girl-Mehri. She is premature and was born in 8th month of pregnancy. She started walking when she was 1.5 years old, but she is still not speaking, just pronounci
amyd.price
Dec 2, 2017

Hello all, My name is Amy Price and I am the new Outreach Coordinator for the Leukodystrophy Family Forum. Leukodystrophy came into our lives much like it did so many; sitting in a hospital room, h
jctorrey
Oct 19, 2017

I posted this on my blog, www.smilesandducttape.com, this week. My son has ALD and is doing well, but his life is complicated. If only there had been newborn screening twn years ago. . . Last week I
Maria Kefalas
Sep 25

We just wanted to give a huge shout-out to the Kind Pediatric Hospice Program at Jefferson Hospital and their amazing music therapy that brings such joy into our life. Music is really the best medicin
April Garcia
Jun 3

I received a phone call 2 weeks ago from the Seating and Mobility Clinic asking if Jackson (our son) needed to make an appointment to have his adaptive stroller refitted. I told the representative tha
Maria Kefalas
Jul 29, 2018

Most days, the grueling routine of caring for a child with leukodystrohy takes a toll. But then, there are organizations and people who can make this journey just a little easier by seeing the beauty
Maria Kefalas
Jul 11, 2018

We love this video of Sam and Madelyn (aided and abetted by their sister and brothers) in a joyful wheelchair drag racing. It's amazing how much our children can teach us about living with the challe
ruthdramis122
Feb 16, 2018

Sierra and Nicholas hanging out at the Leukodystrophy clinic at chop😊🌈
Maria Kefalas
Nov 19, 2017

Last Monday, I got the chance to tell people about my journey with gene therapy. Those who know the story might recall it dates back to Cal's diagnosis back in 2012. Preliminary success in a clinical
jctorrey
Oct 19, 2017

https://smilesandducttape.com/2017/10/17/newborn-screening-cant-think-of-a-clever-title/
c21mmurphy
Aug 23

Hi, my name is Maureen and my son Kole (22 months) just received a diagnosis of 4H Leukodystrophy last month after over a year of trying to figure ot what was causing all his issues. We started notici
Maria Kefalas
Jan 22

Since 2016, when a volunteer at Cal's hospice program at Abington-Jefferson named Marie heard there was a need for hospital gowns small enough for babies, we started to work together with our friends
Maria Kefalas
Jul 27, 2018

Hall of Fame Buffalo Bills Quarterback Jim Kelly's story is legendary. But for the fans who watched his remarkable, and heartbreaking, career with the four Super Bowl appearances that never led to a
Jess Ames
May 18, 2018

I work for a nonprofit known as Angel Flight East (AFE). It provides free flights to children and adults in need of medical treatment far from home. Volunteer pilots use their own airplanes and pay
Maria Kefalas
Jan 4, 2018

If you couldn't attend the Cupcake Gala, check out our video. We are back in 2019 and email me at maria@thecalliopejoyfoundation.org if you would like to get involved. Thanks to the Philadelphia E
aconn1986
Nov 19, 2017

I'm very open and honest about how busy we are and how much of a mess I am, but the truth is, it's so much more complicated than that. I'm usually very positive and, truthfully, it's exhausting. Some

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