Making Memories

Finding Hope

Parents of an infant with Gaucher Type 2 share how they came to see that there really COULD be hope in the face of a fatal diagnosis and the evolution of what they hoped for.  "We went from running away from things to running towards things for Emerson."

We’re normal people and we experience normal things.

It’s so easy to live in the medical world with so many decisions that you forget how to do normal things. The mom of two sons with mitochondrial disease shares a trip to the movies!

We never treated our son like he was sick. It was a way of life.

Parents of a boy with a life-limiting condition talk about how they lived their lives as normally as possible and sought to make as many memories as possible: Do it up and do it up big!

When he wants to do something, you just want to move heaven and earth.

The mom of a 12-year old boy with SMA Type 1 and a trach talks about taking her son on a road trip. Exhausting but rewarding.

You can still find a place for the vent and do fun things.

The mom of a 12-year old son with SMA Type 1 and a trach talks about all the adventures she and her ex-husband, his father, have helped him have: a four-wheeler, a zip line, a sled, a kayak.

We did everything we could just to live life. Lots of photos!

The mom of a little boy with SMA Type 1 talks about how she opted out of counseling or focusing on the disease and instead just lived life as fully as possible: eating cake every day, horseback riding. "I took pictures of him every day. Now I have a picture of his sweet little ear."

You need to make memories to have a whole life with your child.

The mom of a child with SMA Type 1 talks about how she and her husband maximized their time with their son and helped him have as many experiences as possible in his short little life.

Instead of dreading things, we are cherishing them.

Parents of a daughter with Trisomy-18, who has an uncertain future, talk about cherishing every moment, making memories, and keeping the fear and dread at bay.

Preparing for the worst and embracing the present.

The mother of a 5-year old with Leigh's Disease, a mitochondrial condition, talks about how with their daughter's uncertain prognosis with short life expectancy they are all about making memories!

It’s a juggling act.

Parents talk about the challenge of bringing their daughter out of bed for the family moments when it makes her uncomfortable.

Finding Hope

We’re normal people and we experience normal things.

We never treated our son like he was sick. It was a way of life.

When he wants to do something, you just want to move heaven and earth.

You can still find a place for the vent and do fun things.

We did everything we could just to live life. Lots of photos!

You need to make memories to have a whole life with your child.

Instead of dreading things, we are cherishing them.

Preparing for the worst and embracing the present.

It’s a juggling act.