Service Dog for 12 yr old Austynn's Rare Disorder
Donation protected
FROM AUSTYNN: Hi my name is Austynn and I am 12 years old. I love animals, theater and Japanese anime. When I grow up I want to be a pediatric oncologist/diagnostician specializing in rare diseases. I know those are big words, but when you are a kid with a rare disease, you learn a lot of big medical words. I have something called Ehlers Danlos Syndrome or EDS for short. It does a lot of bad things to my body. I am not able to go out and play like most kids my age. Even though I am always in pain, some days I look like every other kid, but other days I am in different braces or casts, unable to get out of bed or the wheelchair I have to use sometimes. Because of my many illnesses my doctor and I decided that I need a Service Dog. We found a company that will train a dog for me but because I need a special hypoallergenic dog and the things the dog needs to learn are harder and take a little longer to learn, the cost is more than my mom can come up with after paying for all of my medical stuff. I'll let my Mom tell you more.
FROM AUSTYNN'S MOM: Hi, I'm Vanessa, Austynn's Mom. I'm a single parent of two children, both live with me at home and Austynn's older sister (who is deaf in one ear) is going to college. She wants to work with animals as a Veterinarian. Austynn wants to work with children like herself with rare diseases. I struggle to work when I can to pay bills while taking care of Austynn who has good days and bad days and sometimes needs round the clock care at home or in the hospital, and I'm also trying to save my pennies to move to a new rental that does not have any stairs. Although there is no cure for Austynn, she can live a longer, more productive life if we manage her symptoms. I know a Service Dog will help Austynn, so I will do everything I can to get one for her. I have included more detailed information about EDS below.
ABOUT THE SERVICE DOG: The dog, who has already been born (I included a picture), will be trained to open and close doors, push handicap door buttons, turn on and off lights, retrieve dropped items, assist Austynn to an upright position, give her mobility assistance (prevent falls and provide stability), bark or find help in a crisis, call 911 if necessary, pull the wheelchair if Austynn is unable to, identify changes in breathing (asleep and awake), identify blood pressure changes, identify known allergens and bring rescue medications.
THE COST: The expenses to buy and train the Service Dog are $30,000, which covers the cost of the hypoallergenic dog (necessary because of her many allergies), basic service dog training, extended service dog training for the more complex specialized tasks, custom service harness, initial vet visit, spay or neuter, microchip, travel to pick up the dog, pet insurance premiums and licensing.
AUSTYNN'S DIAGNOSIS:
Ehlers Danlos Syndrome (rare genetic connective tissue disorder)
Severe Asthma
Mast Cell Activation Syndrome
Postural Orthostatic Tachycardia Syndrome
Orthostatic Hypotension
Autonomic Nervous System Malfunction
ABOUT THE SERVICE DOG: The dog, who has already been born (I included a picture), will be trained to open and close doors, push handicap door buttons, turn on and off lights, retrieve dropped items, assist Austynn to an upright position, give her mobility assistance (prevent falls and provide stability), bark or find help in a crisis, call 911 if necessary, pull the wheelchair if Austynn is unable to, identify changes in breathing (asleep and awake), identify blood pressure changes, identify known allergens and bring rescue medications.
AUSTYNN'S DIAGNOSIS:Ehlers Danlos Syndrome (rare genetic connective tissue disorder)
Severe Asthma
Mast Cell Activation Syndrome
Postural Orthostatic Tachycardia Syndrome
Orthostatic Hypotension
Autonomic Nervous System Malfunction
Cerebellum falling into spinal column
Craniocervical Instability
Vertigo
Hearing Loss
Scoliosis
Atrial Septal Defect (hole in the heart)
Enlarged Heart
Convergence Insufficiency
Gastroparesis (stomac
Craniocervical Instability
Vertigo
Hearing Loss
Scoliosis
Atrial Septal Defect (hole in the heart)
Enlarged Heart
Convergence Insufficiency
Gastroparesis (stomac
h paralysis)
GI Dysmotility
Sleep Apnea
Allergies
AUSTYNN'S SYMPTOMS:
Dislocates joints all over her body
Pops ribs out of place
Bad balance
Broken bones
Blood pressure plummets
Erratic heart rate
Dizzy spells & fainting
Fatigue & weakness
GI Dysmotility
Sleep Apnea
Allergies
AUSTYNN'S SYMPTOMS:Dislocates joints all over her body
Pops ribs out of place
Bad balance
Broken bones
Blood pressure plummets
Erratic heart rate
Dizzy spells & fainting
Fatigue & weakness
Nausea & vomiting
Heat exhaustion
Unstable neck
Headaches
Numbness
Coordination issues
Vision issues
Trouble swallowing
Hard of hearing
ABOUT EHLERS DANLOS SYNDROME (EDS): Austynn has a rare genetic connective tissue disorder called Ehlers Danlos Syndrome that currently has no cure. EDS causes defective collagen in the body. Collagen forms connective tissue from your skin down to your organs, muscles, bones etc. It is like trying to hold a house up using rubber bands, it just doesn’t work. Because of this Austynn dislocates joints in her body daily including her knees, ankles, hips, shoulders, fingers, wrists, jaw, neck, spine and sometimes if she sneezes or coughs too hard, she will even pop her ribs out of place. Her balance is also off so she stumbles and falls a lot and she is always in pain. Because her body bends past where it is supposed to, she also ends up with a lot of broken bones because the normal stability is not there to protect the bones.
MORE SPECIFICS ABOUT AUSTYNN'S EDS: Austynn has many comorbidities that go along with having EDS like Dysautonomia (autonomic nervous system malfunction), Orthostatic Hypotension (her blood pressure plummets) and Postural Orthostatic Tachycardia Syndrom (erratic heart rate). Sheis also unable to regulate her body temperature properly. All of these cause her to have dizzy spells, fatigue, fainting, weakness, vertigo, irregular heart rate, nausea, vomiting and heat exhaustion regularly. Austynn also has Mast Cell Activation Syndrome (MCAS) and many confirmed allergies, but because of the MCAS, her body can and does have allergic reactions to additional random things whenever it feels like it. Sometimes she even has a reaction to her shower water! Austynn's neck is incredibly unstable and on top of having Cranial Cervical Instability, the doctor suspects that she has Chiari Malformation (cerebellum falling into the spinal column). Austynn gets terrible headaches, weakness, coordination issues, vision issues, has trouble swallowing, different body parts go numb, and she started to lose some of her hearing. Austynn also has Scoliosis, Atrial Septal Defect (hole in the heart), Enlarged Heart, Gastroparesis (stomach paralysis), GI Dysmotility, Central Sleep Apnea, and Asthma so bad she is not able to go out and play like most kids her age. Austynn is always in pain and some days she is unable to even get out of bed.
A FINAL NOTE FROM AUSTYNN: I can't wait to have a Service Dog to help me gain more independence and keep me company during my many doctor's appointments and hospitalizations. Please donate any amount and forward this campaign to everyone you know because every dollar helps get me to my goal. Thank you for your support!
A NOTE FROM THE ORGANIZER: Hi! I'm LeeAnne, Austynn's Mima (grandmother). I hope you will consider helping Austynn and her mom reach their goal of getting this Service Dog. I know it will be a big help to both of them, and I truly appreciate your support!
Heat exhaustion
Unstable neck
Headaches
Numbness
Coordination issues
Vision issues
Trouble swallowing
Hard of hearing
ABOUT EHLERS DANLOS SYNDROME (EDS): Austynn has a rare genetic connective tissue disorder called Ehlers Danlos Syndrome that currently has no cure. EDS causes defective collagen in the body. Collagen forms connective tissue from your skin down to your organs, muscles, bones etc. It is like trying to hold a house up using rubber bands, it just doesn’t work. Because of this Austynn dislocates joints in her body daily including her knees, ankles, hips, shoulders, fingers, wrists, jaw, neck, spine and sometimes if she sneezes or coughs too hard, she will even pop her ribs out of place. Her balance is also off so she stumbles and falls a lot and she is always in pain. Because her body bends past where it is supposed to, she also ends up with a lot of broken bones because the normal stability is not there to protect the bones.
MORE SPECIFICS ABOUT AUSTYNN'S EDS: Austynn has many comorbidities that go along with having EDS like Dysautonomia (autonomic nervous system malfunction), Orthostatic Hypotension (her blood pressure plummets) and Postural Orthostatic Tachycardia Syndrom (erratic heart rate). Sheis also unable to regulate her body temperature properly. All of these cause her to have dizzy spells, fatigue, fainting, weakness, vertigo, irregular heart rate, nausea, vomiting and heat exhaustion regularly. Austynn also has Mast Cell Activation Syndrome (MCAS) and many confirmed allergies, but because of the MCAS, her body can and does have allergic reactions to additional random things whenever it feels like it. Sometimes she even has a reaction to her shower water! Austynn's neck is incredibly unstable and on top of having Cranial Cervical Instability, the doctor suspects that she has Chiari Malformation (cerebellum falling into the spinal column). Austynn gets terrible headaches, weakness, coordination issues, vision issues, has trouble swallowing, different body parts go numb, and she started to lose some of her hearing. Austynn also has Scoliosis, Atrial Septal Defect (hole in the heart), Enlarged Heart, Gastroparesis (stomach paralysis), GI Dysmotility, Central Sleep Apnea, and Asthma so bad she is not able to go out and play like most kids her age. Austynn is always in pain and some days she is unable to even get out of bed.
A FINAL NOTE FROM AUSTYNN: I can't wait to have a Service Dog to help me gain more independence and keep me company during my many doctor's appointments and hospitalizations. Please donate any amount and forward this campaign to everyone you know because every dollar helps get me to my goal. Thank you for your support!A NOTE FROM THE ORGANIZER: Hi! I'm LeeAnne, Austynn's Mima (grandmother). I hope you will consider helping Austynn and her mom reach their goal of getting this Service Dog. I know it will be a big help to both of them, and I truly appreciate your support!
Organizer
LeeAnne Krusemark
Organizer
Fulton, NY