Help Raise Funds And Awareness For My Son

I am creating this campaign to help raise awareness and funds for my beautiful resilient 3year old son Grayson. My world changed drastically, a year an a half ago when I received his diagnosis. I was told my son has an extremely rare neurological condition called Angelmans Syndrome, it is a complex genetic disorder that primarily affects the nervous system due to a deletion of his 15th chromosome inherited from me.  The doctor then proceeded to inform me of all the things my baby boy “would never be able to do” As I sat there listening to him explain too me that my son would never be able to live independently and he would always require my care.  He will be delayed cognitively, he will not have the ability to speak, he may not be able to walk, go to the washroom independently. He will suffer from seizures, he will suffer from broken to limited sleeps, difficulty eating and digesting foods. He will suffer from sensory and processing issues. He will have difficulty with movement and balance (ataxia)The list of things my son would not be able to do continued to grow, and my head started to spin, and my heart felt like it stopped, the world and life that I dreamed of for my baby boy just disappeared and I sat in his office in complete fear. I thought to myself, this cannot be right, he must have gotten Grayson’s rest results mixed up. As I sat staring at Grayson in complete disbelief, none of what the doctor told me seemed to be true. Grayson sat in his stroller giving me the biggest, sweetest smile, unaware of the news that was just given to me, and how it would forever change our lives. Angelmans Syndrome affects a very rare 1 in 120,000 people. With it being such a rare disorder it often makes it difficult when seeking medical care and guidance as to what to expect next with Grayson. We rely heavily on other Angelman Families, our amazing team of therapist, and the incredibly dedicated daycare he currently attends, to help support Grayson with his day to day, ever changing needs. As Grayson grows and develops his needs change. As his parent it scares me to think that I cannot keep him safe without providing him special equipment and tools. Grayson cannot ever be left unattended, for fear of his own safety as he has no concept of what is dangerous and what is not. There is no additional government funding to help support my son obtain all the equipment and tools he will require to ensure his safety. He is still a three year old boy who has an amazing sense of adventure and discovery. He is very curious and loves to explore. We encourage that in every way possible, with finding the balance of keeping him safe. Grayson is in desperate need of a safe bed. This is a specialty bed designed to provide Grayson with a safe place for him to sleep, without putting himself or anyone else in the house in danger. This bed will provide him the safety and security he requires during the night. He will not be able to get out and hurt himself. The bed provides a tranquil area for him to unwind after a long day, or any kind of episode. The safe-bed will provides him with all the sensory tools he will require if he should need it to calm himself back to sleep. And on the opposite side it will keep him in a safe environment when he is suffering from broken sleep, or has a seizure. This bed is paramount for Grayson’s need and my family’s safety. The government provides zero funding to families who’s children require this bed, and many other tools they require to succeed safely.I have created this campaign in hopes to raise money to help get the necessities my baby boy needs to thrive. I will continue to raise awareness of this very rare disorder. And advocate, so my non verbal son has a voice. Thank you to everyone who has supported us along this journey. With lots of love Linda Clothier