Our Story

The Samantha & Jake Foundation 4 Hope was created in honor of our children, Samantha and Jake, who taught us that not all superheros wear capes. They lived each day fighting bravely for their every accomplishment, enjoying the simple things in life, loving those around them fiercely and filling the lives of everyone who knew them with pure love, silly laughter, lots of music, tight hugs, forehead kisses and an occasional pinch.

My beautiful Samantha was born in 2002 and sweet Jake in 2005. They were both born with cataracts and had to undergo surgery when they were 4 and 5 weeks old and wore contact lenses for 5 years (until their eyes grew and were able to have surgery to implant permanent lenses.) For years no one could tell us what was wrong even though we did many tests and saw numerous doctors. Sam lost her ability to walk and developed severe tremors at the age of 3, just before Jake was born.

In 2008, when Sam was 5 1/2 and Jake 2 1/2 we finally had a diagnosis – and it was the most devastating news of our lives. Both Samantha and Jake had Cockayne Syndrome, a very rare incurable genetic disease with a life expectancy of 4 to 7 years old. CS impacts the body’s ability to repair damaged DNA, causing cells to die prematurely. Some of the symptoms they had were cataracts at birth and other eye issues (Jake had numerous eye surgeries), hearing loss (Jake had Cochlear implants), small in size and difficulty gaining weight (both had feeding tubes placed), tremors, developmental delays, cognative delays, ataxia (issues with movement), difficulty speaking, sensitivity to sunlight.

Thankfully in 2008 we also found alternative medical treatment that enabled Sam to walk again (after 3 years!) and made her tremors very minimal! Jake started to talk (and never stopped!) and they both were thriving.

Since they were 2 1/2 Sam and Jake attended special schools, which they were both named the mayors of! They recieved tons of therapy both in school and at home – speech, vision, OT, PT, extra teachers at home. Thankfully they absolutely loved going to school and getting more therapy at home. Even though they had so many hardships and life was not easy, they enjoyed so many things – their big family, their pool, their dog Coco, going to the park and animal farms, going to the mall, and having the “real” Santa spend every Thanksgiving with us! Samantha loved playing games on her iPad and getting her nails painted – only blue – and getting Starbucks with her aides. Jake loved Elmo, his computer and singing and dancing all the time!

In 2015 at the age of 13 Samantha passed away and our lives were never the same. We were devastated. Jake didn’t understand what heaven was and for many years was not the happy, always smiling and laughing kid we knew. It was a very hard few years. Three years after Samantha passed we adopted Gina. She was 13, the same age as Jake, and after a few months she and Jake were besties. She helped Jake get back to himself and he loved her just as much as he did Samantha.

In 2021 we lost Jake and we were just so shattered. There was no more loud music and singing or big hugs and funny jokes. No therapists, teachers or aides coming into the house. Without Sam and Jake life was so quiet. Our house became too big for just the 3 of us, and in 2023 we decided to basically pick up and move to South Carolina.

We always had big celebrations on Samantha and Jake’s birthdays and then angelversaries and when we moved we had no family or friends who knew them to share them with. My husband suggested a pickleball fundraiser to raise money to give to charities in honor of them and after our first 2 successful events thanks to our now many great friends, we were asked if we wanted to go big and have an “official” tournament/fundraiser! And that is how Samantha and Jake Foundation 4 Hope was born – a wish granted by my husband to remember Sam and Jake by and also be able to help children who may be differently abled, neglected or in need.

We are so excited to for you all to be a part of Samantha and Jake Foundation 4 Hope! With the help of our sponsor, Market Common Veterans, we are able to raise funds that are tax deductible that will better the lives of hopefully many, many children for years to come! Thank you for your support, love and help. We are grateful for every bit of it!