Jake you are a millionaire. We thank God for choosing us to be your Mom and Dad. It has been an honor, a pleasure and an adventure. You have taught us what true love and acceptance are. We will carry that love through the rest of our days. We miss you, we love you our sweet angel. Jake, you will always be my hero. I love you.
-Mom & Dad

Jake's Story

We were having one of the best summers ever. It was filled with the celebration of our oldest son, Sean graduating high school. We took a family trip to Puerto Rico in June. It was such an adventure. And for Jake, adventure was his middle name. Jake has one of the best imaginations of anyone I know. He loved hiking, exploring old abandoned railroads and creating. He was a master builder. You could hand him almost anything and he could turn it into something. Legos, building blocks, sticks, rocks, you name it and he could make something out of it. He especially loved the beach. He’d spend hours playing in the sand creating sculptures and scenes that he could play in from sun up to sundown. Jake also loved dragons. His dragons were very special to him because he always felt they protected him.

You see Jake was also diagnosed at an early age with PDD-NOS (a mild form of autism) and ADHD. He faced many challenges every day trying to succeed in school and this caused him anxiety and stress. So his imagination and ability to fantasize helped him to cope with his difficulties. When we returned home from vacation, he started summer camp at his school as he did every summer. In August, he was signed up for a community camp. It was something we had not done with him since he left the public school five years ago to attend his school which was for children who learn differently. He was excited to go but was complaining on the first day about a pain in his shoulder. We brushed it off thinking it was just nerves and we tried calming his fears.

 By the third day of camp he came home not feeling well and still complaining about his shoulder. So we took him to the doctor. At first it was a wait and see. But by the end of that week his other symptoms cleared up and the shoulder pain remained. We decided to take him to the ER for an x-ray one night when he could not sleep. They x-rayed his chest, told us he looked fine and sent us home. About four hours later I received a phone call from the hospital. The radiologist was going over his pictures and found a large mass in his chest. I was stunned. After that call, it was a flurry of rushing off to the children’s hospital for tests. It took two full weeks to finally learn that Jake had Peripheral T-cell Lymphoma, NOS. It is extremely rare in children.

In fact of all the children who have been diagnosed there were no two cases alike. It is more prevalent in adults although rare in this population as well. Jake sailed through his first rounds of treatment like a champ. He handled it all so much better than we ever expected. He was so brave.

In December he finished his first rounds of treatment. In January, as we were preparing for him to have an autologous stem cell transplant we learned that his cancer had started to grow again. We put the stem cell transplant on hold to start new rounds of therapy. Because this cancer is so rare our doctors were off the grid as to what treatment to try next. It was anyone’s best guess. We consulted with doctors and researchers all around the country.

The treatment caused complications which ultimately cost Jake his life. He went on to fly with the dragons on February 9, 2018.
Through all of this journey, we learned so much about pediatric cancer and what needs to be done so that our children do not have to suffer.

Every cancer should have treatment options. We need more research and better cures. 4% is not nearly good enough. Our family and Jake’s Dragon Foundation are committed to funding research for better cures, helping families and spreading awareness and advocacy. We will do this so no other family has to bear what our hearts are feeling right now. We will do this for our love for Jake.

Jake's Eulogy

We would like to welcome everyone and thank you for joining us today to celebrate Jake’s life. These last 6 months have challenged us to our core.  But there have also been so many acts of love and kindness. From fixing our mailbox, to feeding and supporting us. To our family and friends that came in to just be with us. We are humbled by the outpouring of support for Jake and our family through this journey. Words just do not do justice to the gratitude that we feel. Thank you.

Jake had a very unique and special spirit.  From the time he was very young until now his life was an uphill climb. He faced many challenges having been diagnosed with developmental delays and learning issues, growth deficiency and finally cancer. But Jake loved the attention. When Jake went into the hospital he referred to himself as “The Legend” because of the attention he received. Jake would have loved everyone being here for him and, looking out to the crowd, he would have said “OH MY GOODNESS!” . If you took time to watch the slideshow today what you saw was a happy little boy who always had a smile on his face.  Jake also had a special weapon his Mom Sandy. Sandy and Jake were inseparable. She took him to appointments, drove him to and from school every day and advocated to everyone on his behalf. She wrote most of these words. His short time with us has taught us so many lessons.

Here are some lessons we’ve learned from Jake

1. Take time to play.  Play in the sand. It was his favorite medium for sharing his creativity. Jake seemed to blossom when we went to the shore. He would meet milestones and seem to grow when he was at the beach. He loved being in the sand.

2. Lose yourself in a fantasy every now and then.  It’s a great stress reliever. Jake’s imagination was like no other.  Believe in dragons. Jake was so creative and could build anything. It took me 9 hours to build that Lego dragon in the back and it would have taken Jake 3 hours- without directions! His creativity was amazing.

3. When you are faced with challenges, Learn how to lean in.  When I stopped fighting against the grain and learned to meet him half way, I began to see the world through his eyes a little more clearly. If you have ever seen the movie Pete’s Dragon, you would understand Jake, If not, please go see it to understand him. That dragon is really there- if you want it to be.

4. Always keep your sense of adventure. There is so much to explore in the world. Jake loved exploring old abandoned trains and exploring the trails for in search of dragons. When we threw his last set if stones away (when we thought we had beat it), we went to Mt Joy and Jake held a battle. He was trying to save the queen dragon and had to fight off some dragon hunters (he wouldn’t explain it to us because he said we weren’t dragons). All I know is that he did win the battle after some fierce fighting.

5. As JRR Tolkien said, “ It simply isn’t an adventure worth telling if there aren’t any dragons in it.”

6. Enjoy the simple things in life. Jake used to bring his big plastic plane to Sean’s baseball games and set up some elaborate crash sites. One time in the middle of the game, someone asked Jake to throw his plane off the stands. Without hesitation Jake climbed the stands and threw his c-31 off the top of the stands. It made quite a sound. He loved it!

 

7.  The simplest things have the most meaning. Be present for them. Milestones that you may not typically celebrate, we celebrated with Jake because he worked hard to reach every one of them.  He surprised us over and over again. Jake did parkour, ran 5ks and passed his swimming test. I didn’t know he could do these things, but he did.

8.  Climb every hill you’re faced with and do it with courage. Jake climbed mountain after mountain his whole short life. He took it all in stride and did it all with a smile. Jake was in the hospital with a breathing tube, tubes coming out of his chest and IVs everywhere. It took 4 nurses and us to get him up out of bed into a chair. He had been in the bed for a week. After an hour and a half he decided he would get back in bed. He stood up – with all that crap coming out of him- and got himself back in bed. That is true strength. When I coached, we asked kids to dig deep, that is truly digging deep. It was amazing.

9. Think outside the box.  Jake taught us how to think about and approach life in a completely different way. I learned that there is so much more to life than what we call normal. It is ok to be different, to choose an unpaved path in life. Accept others for who they are. Lots of his classmates are here. Be yourself.

10. Be Funny. Most people did not see this side of Jake but his teachers did. He was turning into the class clown making funny noises and things. I loved that because it was his personality coming out…  sorry… I was kind of like that. Jake also liked to blame things on everyone else. I’m not sure if I can say this here, but in the hospital Jake like to blame his farts on me.

He would always say “Dad Farted”…

As many of you know, Jake loved country music. The lyrics to Chris Stapleton’s new song Millionaire seem to sum it up.

They say “Love is more precious than gold.”

Can’t be bought and it can’t be sold
I got love enough to spare
That makes me a millionaire

Jake you are a millionaire.  We thank God for choosing us to be your Mom and Dad.  It has been an honor, a pleasure and an adventure. You have taught us what true love and acceptance are.  We will carry that love through the rest of our days.  We miss you, we love you our sweet angel.

Jake, you will always be my hero. I love you.

Dragon Defenders

Sandy McHugh MS. ED

CDO (Chief Dragon Officer)
215-859-1758

sandy(at)jakesdragonfoundation.org

Matt McHugh

LDO (Lead Dragon Officer)
484-294-1109

matt@jakesdragonfoundation.org

Erica Ricciardi

Event Coordinator
610-883-0093

erica(at)jakesdragonfoundation.org

Holly Beauchamp

Project Manager
610-416-1872

holly(at)jakesdragonfoundation.org

Danielle Kane

Social Media Coordinator
215-240-0285

danielle(at)jakesdragonfoundation.org

Jake McHugh

CEO 

Jake’s Dragon Foundation
76 W Third Ave                                                Collegeville PA 19426                                      484-294-1109

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