4 Paws for Mac!

February 28th is Rare Disease Day and we wish to commemorate this day by sharing Mac's story. Mac was diagnosed with Tuberous Sclerosis Complex (TSC) a very rare genetic disease in July 2021, a disease that affects no two people the same. Here is a small snapshot of his story as we begin the journey to raise $17,000 for a seizure assistance dog. 

At the end of July, when Mac was two months old, we took a video of what we thought was odd twitching and sent to his pediatrician hoping she would ease our hearts and minds by telling us it was nothing to worry about; just some weird movements babies often do. She immediately responded and told us we needed to go to the hospital as the odd movements resembled a seizure. We did not know it at the time, but this was the moment our world was turned upside down. 

The next day we were admitted to the hospital and after two long weeks of countless tests, CT scans, MRI, and genetic testing, it was confirmed he had TSC as they found benign tumors in his brain were causing the seizures. TSC is a rare complex genetic disorder characterized by the growth of numerous benign tumors in many parts of the body such as the skin, brain, heart, eyes, kidneys and other organs, in some cases leading to significant health problems. TSC also causes developmental problems, and the signs and symptoms of the condition vary from person to person. Some individuals with TSC have seizures or benign brain tumors that can cause serious or life-threatening complications. Right now, Mac has them on his brain and heart.  While this all has been extremely overwhelming to learn about and process, we are told that early intervention and treatment is critically important for his development. We are thankful this was caught early, and he is receiving the very best treatment through his amazing team of doctors, specialists, and physical therapist. 

We are learning Mac will have setbacks and delays, but we have promised to celebrate all of his small wins and understand he is on Mac’s timeline. While Mac was in the hospital he had a tube surgically placed in his stomach due to him aspirating while feeding, however he is now fully bottle fed by mouth and has even started some baby food. Go Mac! He is working with an amazing physical therapist who has made leaps and bounds with him. He is still having daily seizures so he goes for monthly 24-48hr EEGs to check his meds and seizure activity. It’s hard being away from Ellie, but she is always excited to stay at her GiGi and Papa's house where there are always animal adventures! We were lucky to be chosen as Mac’s parents, people who unconditionally love this big boy with a cute smile, regardless of his difficult set of circumstances. Mac is lucky to have an amazing big sister who is obsessed with him, she kisses his big cheeks daily! 

We have many unknowns in the future, and we are hopeful that a service dog will help with some of these. We were very excited to discover that well-trained dogs can assist in seizure detection and alerting caretakers of ongoing seizures. What an amazing opportunity for Mac! After discovering the benefits and opportunities a service dog will provide, we are all very excited to get started on this journey to equip Mac with a friend that will help him stay safe, and help others know when he needs help. A service dog will provide Mac independence, confidence, companionship, and most importantly, seizure detection and alert.

4 PAWS for Ability is a fantastic organization that finds a dog to best match Mac's needs and trains the dog to alert his parents when he is having a seizure. As you may imagine, this will provide great comfort for our family and safety for Mac, especially overnight when he is sleeping. As you can see, the addition of a service dog will be life-changing and will undoubtedly improve Mac's quality of life. Training a dog for this level of service is quite expensive. Our family is raising funds to help cover the expenses of training and equipping a service dog to meet Mac's specific needs. Our family would ask that you partner with Mac and donate how you can to help make this wish come true!

Thank you for learning about Mac, we know we are so lucky to have our family and friends support while navigating through this!