A New Room for Tobey

We are the Freck Family and we're kind of a circus. We are an army of eight and while loud, we are joyful. We tell jokes, do impressions and rely on our wacky senses of humor and our love for pop culture to balance the seriousness of life that surrounds our every day.

 Tobey, our oldest son, is a sweet, loving and tender soul who now requires our constant care and attention. Our precious son has grown to the age of eleven but still has the mind of an 18 month old trapped inside an older child's severely disabled body. Tobey has spent his entire life bravely fighting against impossible odds. His medical issues have slowly robbed him of his childhood as his diseases have stolen so much life from him year after year. Doctor's have diagnosed him with countless diseases and disorders. Tobey suffers with everything from Mitochondrial Disease to Eosinophilic Esophagitis, Seizure Disorder, Quadriparieses, and Severe Developmental Disabilities. Just to name a few.

 Despite his challenges, Tobey is one of the most truly joyful children that I have ever had the privilege of knowing. He adores people and while he's become completely non-verbal and struggles with his severe auditory processing disorders he can communicate so much with just his tender smile. Even so, his lack of ability to verbally communicate is often his undoing. He has no understanding of how else to communicate his needs, thoughts, desires or emotions-though he tries. He knows a bit of sign language but the signs often have to be adapted to fit his weaning muscle function and still aren't easy to discern. Without an avenue to properly or fully express himself his frustration is expelled in self-harm. He bites his hands or arms. He hits his chest and head. All of this often results in wounds and bruising all over his body.

 As Tobey gets older, he loses more muscle function every year. His loss of physical mobility and internal motility have meant an inability to digest food by mouth. He is fed all of his nutrients through a feeding tube connected to his stomach but still commonly and violently vomits when his reactive system can’t handle the digestive process. Along with that, Tobey has lost all internal muscle control giving him the inability to potty train. He is an eleven year old reliant on adult diapers and care givers to change him. His weakening muscle function makes it more challenging for Tobey to walk, run or play, anything and everything a typical child should be able to do. Each year he continues to lose more and more muscle function and as he has aged has become increasingly dependent upon his wheelchair. On good days, his legs have enough strength to carry him a few steps and he feels like he can conquer the world only to take a pretty nasty fall the very next moment. On the rougher days, his muscles refuse to perform even the simplest of tasks. His degenerating muscles mixed with his developmental disabilities have made Tobey a huge falling risk. He doesn't have the capacity to understand that he can't push his body too far even on the days he feels stronger than usual. He'll attempt to climb the stairs, lose his strength and take a very dangerous tumble. Along with his tendency towards self harm and his high risk of physical falls he has a disorder called Pica which draws our son to consume inedible objects that can be very dangerous to his system and objects that are a high choking hazard. It's been some of our greatest griefs to realize that we cannot take our eyes off of our son for fear of his well-being and the realization that our home, as it is now, has become an unsafe place for our son.

 
Right now, Tobey's bedroom is his sanctuary. It's his "safe" place when he is in pain, experiencing anxiety or is confused. He often has a need to retreat there for comfort and calm, rest and safety but his ability to do so is becoming less and less possible as he starts to lose more physical functions. His bedroom is located upstairs and he frequently struggles to get up them. He requires so much physical help that it is hard for anyone to carry him when he wants or needs to go. His dwindling physical abilities have also made it near impossible to make it to his other favorite places like the outside play ground. Even when family makes it possible for him to be outside, spending time carelessly swinging away his cares, his body cannot handle fluctuations in his body temperature correctly due to the Mitochondrial Disease. He's unable to spend much time outdoors anymore.

 Last October, doctors concerns about Tobey’s safety grew and they suggested placing Tobey in residential treatment. We felt like we had to do what was right for him so we fought insurance for 6 months to get approval. He spent 6 weeks in a residential hospital and it was the hardest 6 weeks for all of us. We visited all the time but every time it was time to leave him, we all cried and every parting got harder and harder. We desperately wanted him home but were trying to hold out so that he could get medical help. The children at the house constantly asked when Tobey was coming home. Tobey in the hospital started to regress and started to disappear. The nurses reported that he stopped smiling and started to isolate himself down at the end of an empty hallway for most of the day. The hospital suggested that we take him home because he couldn’t make any progress. We got the support of an amazing team of doctors and we brought him home and before long he was back to his amazing joyful self. That is when we knew that residential treatment wasn’t going to be an option for our family. That is when we started dreaming about our garage.

 Tobey needs your help! Our family needs to transform our garage into a truly safe sanctuary for Tobey. He needs a place that is filled with all of the things that bring him joy and peace when he needs it most. He deserves to be in a safe environment, close to family and friends that provides him with smiles and laughter but will ensure his absolute safety. This safe space will include a bedroom for Tobey with a special adult size crib to keep him safe at night from his seizures and the dangers of becoming entangled in his feeding tubes. It will have a small play area that has a special needs swing mounted to the ceiling and is filled with safe educational and therapeutic toys, pictures of his family and friends that are securely mounted to the wall. There will be pouf pillows and a special radio for musical therapy. There will also be an attached wheelchair accessible bathroom with an inclusive roll in shower. This transformation is absolutely essential for Tobey.