After their three-year-old son’s diagnosis, a family from Texas built a backyard playground for him to enjoy. Colton Costa has the rare Hurler syndrome, also known as MPS 1. It affects many different organs and tissues in the body causing heart disease, cognitive impairment, respiratory issues, skeletal abnormalities, among many other symptoms. There’s no cure and many people with this syndrome could live about 10–20 years. [1] In the wake of this devastating diagnosis, Colton’s parents want him to enjoy every moment he has.
However, the family gained another concern when they received a lawsuit from their next-door neighbors. The neighbors, a husband, and wife claimed that the playground wasn’t properly screened according to HOA guidelines. However, the Costas insist that the playground was already approved by the HOA. “That’s I think the toughest part about this, the thought of telling him we have to take it down — I can’t even go there right now,” said Colton’s mother, Kimberly Costa.
Living His Best Life
“We’re trying to let him live his happiest, best life right now, and just embracing how great he’s doing currently,” said Costa. She sums up Hurler syndrome as “Essentially his body doesn’t make a certain enzyme that we all need to break things down in the body.”
His doctors warned that he will suffer from serious orthopedic issues in the coming years. Then he’ll eventually die from the disorder. “It’s very hard to use that word because statistics say he shouldn’t live past his twenties and as a mom, that’s the hardest thing you can ever hear — is that your child has a terminal illness but we’re trying to embrace the now,” Costa said.
To help keep him healthy as long as possible, the family invested in a large playground so he could stay active and stave off the orthopedic issues. “I feel like pretty soon you know, the surgeries will start happening… and it’s inevitable, but right now we’re embracing him and his happiness and how great he’s doing,” Costa said.
In another interview, she added, “So, to see him get to run around and play and be as mobile as he is right now when he can be, you better believe we want to see it. We want him to be active and enjoy his life.” [2]
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Fighting For the Playground
Jason Colta, Colton’s dad, is the treasurer of the HOA. One of the neighbors suing him had also been on the HOA but had left recently. They have no comment to the media but their lawsuit includes that they seek $100,000 or non-monetary relief that is a requirement by the state. They state that they just want the playground to be brought up to compliance or taken down. [3]
In a Facebook post, Kimberly Costa described the situation as “They don’t ‘like’ our playscape. They claim it brings down their property value. They call it an eyesore and have told us multiple times it goes against our HOA.” But she added “We are NOT the first neighbor he has sued” and “The HOA approved the playscape before it was ever even installed!!!
“This has been an ongoing debacle since the day we got it. Our next-door neighbors have been very vocal that they do not like it and that we should have asked THEM about getting a playscape. Here’s the kicker— They know Colton’s story. They know what our family has been through. They know he had a bone marrow transplant and has a terminal illness.
However, other neighbors and friends decorated the Costa’s front yard with foam hearts with encouraging, hand-written messages. “It’s pretty overwhelming the amount of love and support we’re being shown through all this, which I’m thankful for,” Costa said.
In the end, the neighbors dropped the suit on the playground and Costa updated her Facebook post. “The lawsuit has officially been DISMISSED! …Thank you all so much for your prayers and support! We are blown away by the amount of love our family has been shown! Now we can focus on what’s truly important— our time together as a family.” [4]
More About Hurler Syndrome
Mucopolysaccharidosis type I (MPS I) is actually divided into three separate syndromes, Hurler syndrome, Hurler-Scheie syndrome, and Scheie syndrome, which range from most to least severe. The symptoms begin to show within the first year of life. Depending on the severity of the case, certain medical issues arise as the syndrome progresses, include:
- Fluid buildup in the brain
- Heart valve issues
- Frequent respiratory infections
- Enlarged vocal cords
- Sleep apnea
- Enlarged liver and spleen
- Vision loss
- Hearing loss
- Joint deformities
- Skeletal abnormalities
- Carpal tunnel syndrome
- Heart disease
Severe MPS 1 develops in about 1 in 100,000 babies and it’s caused by a gene mutation. [5] The only treatments available can prolong survival and ease some symptoms, not cure it entirely. It’s a bleak diagnosis for a three-year-old, but fortunately, Colton Costa has his supportive parents, his amazing community, and of course, his playground to help him every step of the way.
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Sources
- “Hurler syndrome.” GARD. March 1, 2014
- “Neighbors File Lawsuit Over Large Playscape for Terminally Ill Child, Claiming It’s Too Tall, Lowers Property Values.” Newsweek. Melissa Lemieux. January 21, 2020
- “Lawsuit dismissed over playscape for terminally-ill Georgetown boy.” KVUE.
- “Kim Costa.” Facebook. January 18, 2020
- “Mucopolysaccharidosis type I.” Medline Plus. Genetics Home Reference.