Blessings for Brant
Donation protected
Hello, my name is Brant and I was born with a rare neurological disorder called Moebius Syndrome. Moebius Syndrome affects approximately 1 of 50,000 - 500,000 people with quite the variety of symptoms. This disorder primarily affects the nerves and muscles that control facial expressions (examples include smiling, blinking, and squinting) with a lack of eye movement. Other features of Moebius include limb abnormalities and weakened muscle tone.
I was born with the inability to move my eyes side to side, make most facial expressions (I can still give a little smirk), and swallow appropriately. I was also born with bilateral clubbed feet and micrognathia (small mandible), which are all associated with Moebius Syndrome. I was also born with two small holes in my heart called ventricular septal heart defects, however my heart is now perfect!
My Story:
I was born at Maple Grove Hospital on June 5th, 2018, weighing just 5lbs 11oz. I had some feeding difficulties since my mouth didn't open very big and didn't form a seal around a nipple. I wasn't able to eat enough and tuckered out pretty quickly, so I was transferred to the NICU to have a nasogastric (NG) tube placed until I could learn how to eat.
After a few days in the NICU, I had my first ride in an ambulance and was transferred to the University of Minnesota's NICU to be further evaluated by specialists due to my feeding difficulties. I fooled the doctors into thinking I had a cleft palate...I just wanted to be close to a friend! After about two weeks in the hospital, I started figuring out this whole eating thing, at least I thought so, and was sent home with a special bottle.
I struggled to grow over the next three months and was seen by many specialists who performed many tests over this time. My mom and dad started noticing other "symptoms" were presenting themselves, such as the inability to track an object with my eyes, blink, smile, or suck on a pacifier.
In September, after months of my mom asking for my swallow to be evaluated, a doctor took pictures of me while I drank from a bottle. The pictures showed I was silently aspirating which means I had fluid going into my lungs instead of all of it going into my tummy. I was doing this without coughing. This led me to a five night stay at the hospital for a surgery to receive a gastrostomy tube (G-tube). Mom says I took it like a champ and was discharged one day after surgery. I am currently unable to eat or drink anything orally and it is unknown if I will ever be able to. I sure hope I can eat one day; my dad's breakfast spreads on weekends sure smell delicious!
In October, I was seen by an opthamologist who finally diagnosed me with Moebius Syndrome based on clinical findings, as there currently isn't one specific test to diagnose Moebius Syndrome.
Fast Forward to Current:
I have been seen by many specialists over my lifetime; I have many miles on my stroller. Specialists I've seen include a cardiologist, neurologists, an ophthalmologist, gentisists, an orthopedist, craniofacial specialists, a complex care physician, dieticians, a dentist, speech therapists and physical therapists.
Although I have endured much in the first six months of my life, my biggest challenges have yet to come, which includes talking. I will have to learn to say words and make sounds differently than most people since my lips and tongue are essentially paralyzed.
I have greatly appreciated all the love and support received and will continue to receive during this journey. I am wanting to help out with expenses as my parents have been so determined to find answers. My current needs include a feeding pump, g-tube supplies (tubing, bags, syringes, button), orthotics for my clubbed feet (I have already gone up 3 sizes), and speech therapy and physical therapy each once a week. My mom also "plays" with my mouth about 3x a day to help prep me for talking. My mom and dad are currently looking at another therapy that will give me a little shock to improve my muscles called vital stimulation which might help improve my swallowing.
I would love for my story to be shared as Moebius Syndrome is a rare disorder and many are not aware of its existence. My mom and dad have had to continually, and will continue, to advocated for me to ensure I get connected to the best resources and to ensure I have the best outcome. I have some pretty awesome parents if you ask me!
Any amount, big or small, will help relieve some of the financial stress on my parents while they stay strong for me and my big brother.
With Love,
Brant
I was born with the inability to move my eyes side to side, make most facial expressions (I can still give a little smirk), and swallow appropriately. I was also born with bilateral clubbed feet and micrognathia (small mandible), which are all associated with Moebius Syndrome. I was also born with two small holes in my heart called ventricular septal heart defects, however my heart is now perfect!
My Story:
I was born at Maple Grove Hospital on June 5th, 2018, weighing just 5lbs 11oz. I had some feeding difficulties since my mouth didn't open very big and didn't form a seal around a nipple. I wasn't able to eat enough and tuckered out pretty quickly, so I was transferred to the NICU to have a nasogastric (NG) tube placed until I could learn how to eat.
After a few days in the NICU, I had my first ride in an ambulance and was transferred to the University of Minnesota's NICU to be further evaluated by specialists due to my feeding difficulties. I fooled the doctors into thinking I had a cleft palate...I just wanted to be close to a friend! After about two weeks in the hospital, I started figuring out this whole eating thing, at least I thought so, and was sent home with a special bottle.
I struggled to grow over the next three months and was seen by many specialists who performed many tests over this time. My mom and dad started noticing other "symptoms" were presenting themselves, such as the inability to track an object with my eyes, blink, smile, or suck on a pacifier.
In September, after months of my mom asking for my swallow to be evaluated, a doctor took pictures of me while I drank from a bottle. The pictures showed I was silently aspirating which means I had fluid going into my lungs instead of all of it going into my tummy. I was doing this without coughing. This led me to a five night stay at the hospital for a surgery to receive a gastrostomy tube (G-tube). Mom says I took it like a champ and was discharged one day after surgery. I am currently unable to eat or drink anything orally and it is unknown if I will ever be able to. I sure hope I can eat one day; my dad's breakfast spreads on weekends sure smell delicious!
In October, I was seen by an opthamologist who finally diagnosed me with Moebius Syndrome based on clinical findings, as there currently isn't one specific test to diagnose Moebius Syndrome.
Fast Forward to Current:
I have been seen by many specialists over my lifetime; I have many miles on my stroller. Specialists I've seen include a cardiologist, neurologists, an ophthalmologist, gentisists, an orthopedist, craniofacial specialists, a complex care physician, dieticians, a dentist, speech therapists and physical therapists.
Although I have endured much in the first six months of my life, my biggest challenges have yet to come, which includes talking. I will have to learn to say words and make sounds differently than most people since my lips and tongue are essentially paralyzed.
I have greatly appreciated all the love and support received and will continue to receive during this journey. I am wanting to help out with expenses as my parents have been so determined to find answers. My current needs include a feeding pump, g-tube supplies (tubing, bags, syringes, button), orthotics for my clubbed feet (I have already gone up 3 sizes), and speech therapy and physical therapy each once a week. My mom also "plays" with my mouth about 3x a day to help prep me for talking. My mom and dad are currently looking at another therapy that will give me a little shock to improve my muscles called vital stimulation which might help improve my swallowing.
I would love for my story to be shared as Moebius Syndrome is a rare disorder and many are not aware of its existence. My mom and dad have had to continually, and will continue, to advocated for me to ensure I get connected to the best resources and to ensure I have the best outcome. I have some pretty awesome parents if you ask me!
Any amount, big or small, will help relieve some of the financial stress on my parents while they stay strong for me and my big brother.
With Love,
Brant
Organizer
Lindsey Bontjes
Organizer
Stacy, MN