Meet NPA

Though conventionally thought of as one of the Ashkenazi Jewish diseases, Niemann-Pick Disease, Type A has a far reach, touching families of all heritages. And just as we are all made up of different backgrounds and come from all walks of life, we all have taken different approaches to handling every parent's worst nightmare.

You can read more about Quinn at Quinn's Story. And below are the stories of just a few of her peers.


Trek Atlas Ingram
Trek Atlas IngramTrek was diagnosed with NPA at 9 months old after living a sun-filled life on Maui. When mom Chelsea – one of our Founding Board Members – and dad Jarrett found out that Trek had an extreme case on the spectrum of NPA, and was expected to live only a few more months, not years, they decided to focus strictly on pain-management.

"We also had always dreamed of taking Trek and his two older brothers on a trip around the world, and felt this was our only chance to do so as a family of 5. We left America 1 month after Trek's diagnosis (armed with a years supply of pain medication) and took Trek to 4 countries. He died in his mama's arms in Thailand with his daddy and brothers all loving on him.

Trek's life was short, but the sweetest and most perfect for the time we had with him. We miss him every day, our lives will never be complete without him."

Read more about Trek on his family's website


Wylder James Laffoon
Wylder JamesSon of Shannon and Steven – and big brother to Koa – Wylder James is our NPA warrior.  Born on May 15, 2009 Wylder made his home in Arizona with his parents and best dog friend Maddie.  As his mom Shannon puts it, Wylder – and his parents – are “mutts”.  Shannon’s family is mainly Irish but dad Steven is a complete mix, including a dash of Native American.

Wylder and his family adopted a "no stone unturned" attitude, exhausting every possible option in their search to find treatment and a cure. Traditional and untraditional therapies were tried and the Laffoons even set up the only in-home PICU (Pediatric Intensive Care Unit) in the state to make sure that Wylder received the best possible medical care and symptomatic treatment. Per Shannon, "Personalizing Wylder's care versus having him seen as having only the label of NPA with an average life expectancy of 18 months was a constant up-hill battle, but important to us. We wanted his fight and journey to be supported and all his own."

In his honor, Wylder's parents have created Wylder Nation, a recognized 501c3 nonprofit organization dedicated to "accelerating the discovery and development of treatment options for Lysosomal Storage Disorders, of which NPA is one.

Read more about Wylder on his family's website


Joāo Pedro Neves
Joao PedroJoao Pedro was born on September 1, 2012 to a "typical Portuguese family," per mom Sandra. That is, until July 2013 when Sandra was told "All of the curable lysosomal storage diseases have been tested, and your son hasn't a curable disease." And in September 2013, Sandra learned - for the first time – about Niemann-Pick Disease, Type A when the doctors confirmed that it was NPA that was effecting Joāo.

In Sandra's own words, "Now, my son is 20 months, he is completely hypotonic. Most of the times he is very uncomfortable; he cries when I hold him in my harms because of this discomfort…But he still eats, his favourite food – mush with formula; smiles, when he is happy; holds little toys and goes on being very observant. Most of the times he feels tired, but when he is better he loves to go for walks in places where he can see people, lights and movement. João the sweetest child that I know and even in pain he has the sweetest look that you could imagine.

My family and my friends are an important help. We are trying to face this with realism and being strong. We are trying to not to change our routines or our life, trying to act normally and protect João from the suffering and discomfort with all our strengths. When people said I am very strong, I usually answer that if it was your son you would be the same strong person, because your little son needs you so much and you are responsible to give him the best conditions and dignity."

Jacob Lee Brooks
Jacob Lee BrooksJacob Lee – or Jakey, as his family affectionately refers to him – was born on September 20, 2010 to Sarah and Josh Brooks. Made up of Portuguese, Irish and Scottish blood, Jake is now big brother to Kelly Joy and another sweet girl who will join her family soon.

Upon learning of his diagnosis, Sarah and Josh were "completely devastated". After searching far and wide, with trips as close to home as Stanford and as far as New York, the Brooks family turned to a quote Sarah found shortly after learning Jake had NPA/B.

"The greatest part of our happiness depends on our dispositions, not our circumstances." - Martha Washington

From that point forward, "We chose to live in the moment and fill each day with JOY, laughter and an abundance of love! Jacob deserved a life filled with love, not one filled with pain and discomfort.  We re-arranged work schedules to ensure that one of us was always with him and were the sole providers of his care. Despite knowing that Jacob would be limited in his abilities, we chose to never limit him in the life experiences that he could have. Like any other family, we went camping, to the zoo, to the aquarium, to the beach, hiking, trick-or-treating -- we read countless books, watched cartoons, sang silly songs and just loved on him every.single.minute. 
Our little man was loved more fully than any person we have ever met. Jacob filled our hearts with so much joy!"

Read more about Jake on his family's blog Joy of Jacob


Hanna Emilia Thierfelder
Hanna Emilia ThierfelderHanna was born on April 17, 2011 to Tina and Bernd Thierfelder in Aschaffenburg, Germany. Hanna's roots are a mix of the Serbo-Croatian family tree of her mother and her German father. Her day of birth was a sunny, spring like day such as any other ceremonial days like her birthdays, christening and other in her short, intensive life. In general she always felt good in the warm sun, enjoyed the beauty of nature, especially flowery meadows by watching butterflies flying around and other children playing together. 

After her NPA diagnosis in June 2012 we fell into a deep hole and had to cope with the fact that nothing in life would be the way it once was. But we also knew that it was our mission to give our sweet babygirl the best life that was possible in her remaining time on earth.

In the end of November 2012 we moved to Munich where she settled in easily and received best possible medical care even if that desease couldn’t be cured.

With all the love we gave to her and she gave us back she showed us what’s really important in life. She was and will ever be the sunshine for us and all the other people who fortunately could meet her. She had the fascinating ability to encircle everybody magically who paid full attention to her – she must be an angel.

Read more about Hanna on her website which is German but can be translated in many different languages.