Four and half year old Michael Warechowski is one of the sweetest little boys you will ever meet – everyone who meets him agrees. Michael is the only child of Katie and Mike Warechowski of Marietta, GA . Those closest to him will tell you that he is more snuggly than any child you’ve ever met. He loves his little “babies” as his parents call them – his little stuffed animals that he hugs while he sleeps and insists on carrying around with him everywhere he goes.

Michael was a perfectly healthy, normal baby for most of his life. He reached most of his milestones right on target – rolled over at 4 months, sat up at 6 months, crawled at 8 months and began talking at 10 months. In fact, his speech seemed to be above average as he was saying sentences as early as 16 months. He learned his colors and shapes around 18 months and was able to count all the way to 20 (“Count to 20, holy cow” as Michael would say). When Michael finally decided to stand up and try to walk, his parents Katie and Mike noticed that his feet looked a little funny so they began with a series of doctor’s appointments including the chiropractor, pediatrician, orthopedist and finally, neurologist. The neurologist ordered an MRI and when they found something questionable in his brain, they ordered some blood work.

The Wachowski's worst nightmare came true when they received the results from the blood tests. At 23 months Michael was diagnosed with Metachromatic Leukodystrophy (MLD). MLD is a rare neuro-degenerative disease with no cure; it is fatal. Symptoms include muscle wasting and weakness, muscle rigidity, developmental delays, progressive loss of vision leading to blindness, convulsions, impaired swallowing, paralysis, and dementia. Children may become comatose. Most children with this form of MLD die by age 5, often much sooner.

Since his diagnosis on Katie’s 31st birthday (March 27, 2012), Michael has lost all of his abilities: he cannot talk, eat by mouth, sit up or play. He is fed only through a feeding tube, and he is heavily medicated, as MLD is very painful. The only treatment for this disorder is a bone marrow, stem cell or cord blood transplant. Unfortunately, transplant is not generally recommended for late infantile onset of MLD so the Wachowski's have decided not to put Michael through transplant but instead they are keeping him at home where he is happy and they can share him with everyone who loves him.

In July, the Wachowski's went to visit Michael's specialist in Pittsburgh and during a routine MRI, they found a large hematoma on his brain. After having hydrocephalus back in November of 2013 Michael had a shunt placed. Over the last year, his shunt was draining the fluid from his brain too quickly causing some blood vessels to burst. This caused the hematoma. As soon as they got home from Pittsburgh, he was admitted to Scottish Rite for a second brain surgery. Michael is now having several seizures a day and finding the right dose of seizure medication is a constant struggle.

Katie and Mike have owned their own fitness business since 2009 and are thankful to have the flexibility to be able to be there to care for Michael. Unfortunately times are tight. So far this year, they have spent about $15,000 out of pocket on the many things Michael needs. At the beginning of 2014, Michael's insurance policy changed to comply with the new Healthcare laws. The amount they have to spend before Kaiser will pay 100% has gone from $4,000 to $8,000. They spend about $440 per month on non-insurance covered therapies like massage, acupuncture and craniosacral therapy. Also, Katie makes 1/2 of his food by blending organic whole foods, totaling $150/month.

Ride to Give wants to help by raising enough funds to cover at least one year of out of pocket bills for Michael. This will take a HUGE burden off his parents and allow them to enjoy their remaining time with their son without being constantly stressed about their finances. Please help us make 2015 a year of peace for the Wachowski's family. You can read more about Michaels journey on their blog "Michael Warechowski IV."