Hugs for Hudson

at Beyond Batten Disease Foundation

Hugs for Hudson

Hudson Phillips lives in Columbus (Galena), Ohio with his dad Eddie, his mom Amy and his 13 year old brother Grant. He is an energetic, funny, smart, inquisitive, talented and compassionate 10 year old.

Hudson is interested in everything that is an assault to the senses. He loves all kinds of music and musicians. He sings, dances and plays several different instruments. Like most 10 year olds, Hudson enjoys imaginary play with friends, riding bikes, sledding, swimming and playing in the snow, the sun and the rain. He really delights in smelling flowers, wearing cologne and eating nearly everything; especially fresh fruit, vegetables, pizza, and chicken wings. He likes watching TV, playing his IPad, having parties, celebrating holidays, going on vacation and visiting family. Hudson also has an amazing connection to animals.

In early 2013, when Hudson was 4 years old, we started noticing some signs of academic and social/emotional delay. In the months following, we began to wonder if Hudson was having difficulty with his vision. After an eye exam in July of 2013, we were saddened to hear that Hudson’s uncorrected vision was at 20/200 and that he had some “peculiarity” in both retina (bulls-eye macular).

After a host of appointments and tests, we were told that Hudson, who was just turning 5, had a very rare degenerative retina disease for which there is no treatment or cure. We were devastated. Our son was going blind and there was nothing we could do about it. By the time Hudson started Kindergarten, his vision, had rapidly declined to 20/400 at three inches. That means what we see from 400 feet away, he sees at 3 inches.   As a result of his rapid vision loss, Hudson was referred to a Neurologist to see if there may be a neurological component contributing to his vision loss. In November of 2014, Hudson began DNA testing.

Sadly, January 5, 2015, we were given the worst possible news that any parent could hear. Hudson’s DNA testing revealed that he has juvenile Batten disease. Batten disease is an extremely rare neurodegenerative disease that causes blindness, seizures, and slowly and painfully robs its victims of their mind, body and eventually their young life by their late teens to early 20’s. Currently, there is no treatment or cure for this unforgiving disease. But there is HOPE!

It’s been three and a half years since Hudson’s diagnosis and it has changed how we approach life. Almost immediately we realized that we had a choice to make. We could either allow ourselves to wither away in despair or fight to eradicate Batten. We have partnered with Beyond Batten Disease Foundation to create the Hugs for Hudson research fund. In 2016 we started the Be Project to raise $6,000,000 for this potentially lifesaving clinical trial. We have raised $5,000,000 and have only a few months left. The Hugs for Hudson research fund is trying to raise $100,000 to get us to our goal. Your donations will go directly to the critical research that is needed to save the dreams and lives of all the children suffering with this devastating disease. With your help we can make the impossible, possible!

Beyond Batten Disease Foundation was founded in 2008 to eradicate juvenile Batten disease by raising awareness and funds for medical research. Beyond Batten’s strategy brings together other affected families to connect communities and resources to achieve the goal. Hugs for Hudson is partnering with BBDF to find a cure for juvenile Batten disease for Hudson and hundreds of other children.

The Be Project is a $6 million campaign to fund the first-ever treatment for juvenile Batten disease. Your contributions are making a difference!

Hugs for Hudson has a raised a total of:

$4,910

What Supporters are Saying:

Contributor Comment
Michael DiCecco Supporting Hugs for Hudson!
Carli Lanfersiek Supporting Hugs for Hudson!
Tiffany Hall Supporting Hugs for Hudson!
Kristin Janutolo May God bless you and Hudson. Keep going!
Susan McKnight Supporting Hugs for Hudson!
Kyle Rafferty Supporting Hugs for Hudson!
Herb Reeder Supporting Hugs for Hudson!
Karen Layman Supporting Hugs for Hudson!
Amanda Butler Supporting Hugs for Hudson!
Michael Ross Supporting Hugs for Hudson!
Tim Horn Go Hudson!
Judith Cummings Supporting Hugs for Hudson!
Jeffrey Smith Supporting Hugs for Hudson!
Stilyana Jagger Supporting Hugs for Hudson!
Beth Russell Supporting Hugs for Hudson!
Christopher Wallace Supporting Hugs for Hudson!
Caleb & Nate Gregg Supporting Hugs for Hudson!
Darlene Williams Supporting Hugs for Hudson!