Patient Stories

06.02.2022

Positively Adored: Michal’s 5th Birthday

Patient Stories

04.23.2022

Birthday Poem for Saijayant’s 13th

Patient Stories

04.19.2022

Isabella’s 1st Birthday

Patient Stories

04.04.2022

Happiness and Joy for Vic’s 3rd Birthday

Patient Stories

03.31.2022

Duda’s 3rd Birthday: Purest Form of Love

Patient Stories

11.24.2021

Journey to a G-tube: ‘Grace’s Tube’ to Health

Patient Stories

11.08.2021

Marc’s 17th Birthday: Our Wish is Growing to Infinity and Beyond!

Patient Stories

10.31.2021

Bringing People Together: Elora’s 3rd Birthday

Patient Stories

10.15.2021

Making the world a better place: Ezaan’s 8th Birthday

Patient Stories

09.23.2021

Demi is 18 and full of spunk

Patient Stories

08.23.2021

Nicholas’s 4th: That Amazing Smile

Patient Stories

06.02.2021

Michal’s 4th Birthday: Strength and Smiles

Patient Stories

05.19.2021

How Time Flies — Burcu’s 40th

Patient Stories

04.23.2021

“Such a Super Star You Are:” Saijayant’s 12th Birthday!

Patient Stories

03.15.2021

Happy 14th to our Beautiful Boy Benjamin

Patient Stories

08.23.2020

To Our Sweet Boy Nicholas on Your 3rd Birthday!

Patient Stories

02.29.2020

Rare Disease Day is a Day I Celebrate

Patient Stories

02.15.2020

Mason’s 3rd Birthday: Our “Mr. Incredible”

Patient Stories

11.08.2019

Marc’s 15th Birthday: Our Adventure Continues

Patient Stories

09.24.2019

Gage’s 20th: Defying the Odds

Patient Stories

09.23.2019

Our Sunshine: Demi’s Sweet Sixteen

Patient Stories

09.17.2019

Willow’s 4th Birthday: Challenges & Blessings

Patient Stories

08.23.2019

Nicholas’ 2nd Birthday: He “never stops fighting”

Patient Stories

07.29.2019

Thomas’ Sixteenth: Surrounded & Supported by Family & Friends

Patient Stories

06.03.2019

Jordan’s 23rd Birthday: Smiling “like a rock star”

Patient Stories

05.30.2019

Special reflections on Emily Jane’s 21st Birthday

Patient Stories

05.19.2019

“I’ve always read from your eyes”: Burcu’s 38th Birthday

Patient Stories

04.29.2019

“Race for Mase” on Mason’s 10th birthday!

Patient Stories

04.23.2019

Saijayant’s 10th: “Teaching Us What Counts the Most”

Patient Stories

03.25.2019

Numa’s 10th Birthday: Advancing Through Life with Joy & Will

Patient Stories

03.22.2019

Our First Natural History Study Visit: Research & Fellowship

Patient Stories

02.15.2019

Mason’s 2nd: Lighting up Every Room!

Patient Stories

12.20.2018

Special Performance of Nutcracker Brings Holiday Magic

Patient Stories

11.11.2018

Tai Tai’s 8th birthday: Smiling is his “main symbol”

Patient Stories

11.08.2018

From fear to hope: 14 years living with Marc

Patient Stories

10.09.2018

“F is for Family”: Sibling Lessons & Love

Patient Stories

09.27.2018

JJ’s Second Birthday: “Our Boss baby”

Patient Stories

09.24.2018

Gifts from Gage on his 19th Birthday

Patient Stories

09.11.2018

Reflections from NGLY1 parents on their son’s 6th birthday

Patient Stories

04.08.2018

Intensive Therapy Program at NAPA Center

- Kristen Wilsey

Patient StoriesResources

09.14.2017

Attending the GSF 2017 NGLY1 Conference – Feeling Part of Something Groundbreaking

Patient Stories

08.30.2017

When despair turns to hope

Patient Stories

08.25.2017

Families Sharing Knowledge about Therapies

- Quirine Eijkenboom

Patient StoriesResources

02.20.2016

Living with the Wrong Diagnosis

Patient Stories

12.29.2015

Christmas 2015

- Matt Wilsey

Patient Stories

06.20.2015

Visiting the Mol Family in the Netherlands!

- Matt Wilsey

Patient Stories