Hudson Hubbell
Donation protected
My nephew Hudson (huds) Hubbell has XLMTM condition below is a brief description of the disorder:
X-linked myotubular myopathy (XLMTM) is a rare genetic neuromuscular disorder that is characterized by muscle weakness that can range from mild to profound. Symptoms are often present at birth, but may first develop during infancy or early childhood. Common symptoms include mild to profound muscle weakness, diminished muscle tone (hypotonia or "floppiness"), feeding difficulties, and potentially severe breathing complications (respiratory distress). Feeding difficulties and respiratory distress develop because of weakness of the muscles that are involved in swallowing and breathing. The overall severity of the disorder can range from mildly affected individuals to individuals who develop severe, life-threatening complications during infancy and early childhood. Most affected individuals have a severe form of the disorder and respiratory failure is an almost uniform occurrence. XLMTM is caused by mutations to the myotubularin (MTM1) gene. The disorder is inherited as an X-linked recessive condition. 1 in 50,000 boys have this disorder
To say this has not impact Hudson life and his parents Josh and Sara Hubbell would be an understatement. Between going to trip to Seattle childrens hospital, medication, eating only through feeding tubes along with medical bills stacking up for his everyday life. Sara and Josh have been the parents that every child deserves but they could use an hand with expenses. Some of the expenses are special car seat hudson will need that his medical insurance will not cover. This so he can hold his head up correctly and his body which is for safety and comfort. Speech device so he can have an easier time talking to everyone! Setting up Sara and Josh with the proper conversions for their cars to transport Hudson safely to doctor appointments and other events.
These are things that Hudson needs now! Everyone deserves the best shot in life. Hudson is a special boy who has been a warrior through all of the poking and prodding long days at the doctor office and many trial and error to help him out. It takes a village to raise a child so i'm asking my village to help out this little boy to make his life and his mom and dad's life easier
Thank You!
X-linked myotubular myopathy (XLMTM) is a rare genetic neuromuscular disorder that is characterized by muscle weakness that can range from mild to profound. Symptoms are often present at birth, but may first develop during infancy or early childhood. Common symptoms include mild to profound muscle weakness, diminished muscle tone (hypotonia or "floppiness"), feeding difficulties, and potentially severe breathing complications (respiratory distress). Feeding difficulties and respiratory distress develop because of weakness of the muscles that are involved in swallowing and breathing. The overall severity of the disorder can range from mildly affected individuals to individuals who develop severe, life-threatening complications during infancy and early childhood. Most affected individuals have a severe form of the disorder and respiratory failure is an almost uniform occurrence. XLMTM is caused by mutations to the myotubularin (MTM1) gene. The disorder is inherited as an X-linked recessive condition. 1 in 50,000 boys have this disorder
To say this has not impact Hudson life and his parents Josh and Sara Hubbell would be an understatement. Between going to trip to Seattle childrens hospital, medication, eating only through feeding tubes along with medical bills stacking up for his everyday life. Sara and Josh have been the parents that every child deserves but they could use an hand with expenses. Some of the expenses are special car seat hudson will need that his medical insurance will not cover. This so he can hold his head up correctly and his body which is for safety and comfort. Speech device so he can have an easier time talking to everyone! Setting up Sara and Josh with the proper conversions for their cars to transport Hudson safely to doctor appointments and other events.
These are things that Hudson needs now! Everyone deserves the best shot in life. Hudson is a special boy who has been a warrior through all of the poking and prodding long days at the doctor office and many trial and error to help him out. It takes a village to raise a child so i'm asking my village to help out this little boy to make his life and his mom and dad's life easier
Thank You!
Organizer
Steven Ransier
Organizer
Port Orchard, WA
