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Keep Amber’s Light Bright!
(Video of Amber's Journey)
Our sweet friend Amber needs our help!
The Burt Family in Colorado Springs, Colorado are fighting to keep Amber at Home!
She needs treatments, tools and services to remain at home in the care of her mother Sharon. If Amber does not improve substantially, she could be put into a care facility.
Amber Burt is having seizures, anaphylaxis (she just stops breathing) and she has a “heavy burden” of blood clots in her lungs.
One blood clot can be deadly. Multiple blood clots are a life threatening condition. Both of Amber’s lungs are FULL of blood clots (PE’s or pulmonary embolisms) that are not resolving even after intensive drug therapy. Unfortunately she is resistant to conventional treatment for pulmonary embolisms.
(Heart Pace-Maker Revision...AKA Fix the Mess!)
The Burt Family needs funds to get Amber treatment in California ASAP!!! There is a specialist on stand-by willing to treat Amber as soon as she can book a flight. These treatments are crucial...and they are expensive, costing tens of thousands of dollars,.....and that is not counting the costs of her medications.
We hope to raise enough support so Amber can begin treatments before Christmas!
(Amber doing at-home lung care)
Amber has been having seizures and asthma attacks at the same time. She is starting to lose consciousness and respiration.....(bad combination!)....
and there are **NO EPI-pens** available from ANY pharmacies!
She is also coping with venom neurotoxicity from recent multiple spider bites and wasp stings, (just millimeters from her spinal cord).….Amber has venom allergy.
("Mot, take the knife!"...trouble eating dinner)
The Back Story
Amber and Momma Sharon (Mot) have been trying to do it on their own for so long. With the crisis onset of anaphylaxis and vomiting on top of 24-7 seizures, genetic migraines, heart-lung issues, history of kidney failure, inflammation of the malformation on her brain, muteness, unexplained bone pain and so many other issues… they are overwhelmed, its gotten too big.
Amber has been fighting & fighting, she’s exhausted. Its been a long road.
The good news is,
There is:
Help & Hope!
(The Botched Pacer Surgery)
With the help of many medical and community hands, hearts and heads, the Burts have found treatment protocols for some of Amber’s genetic disorders and conditions! The treatments are out of state and not covered by insurance.
They have found help to address her connective tissue disorder (EDS), brain inflammation & breathing issues.
One EDS specialist, out-of-state doctor has reached out & agreed to treat Amber immediately!... offering to make room on her clinic calendar when Burts are set to travel.
The sooner Amber begins these treatments, the better!
Winter came early to Colorado and the cold weather is making Amber’s health even more unstable.
The Burt family have hope that there will be a breakthrough in the condition of Amber’s lungs with the treatment of her (EDS). There is also hope that she will be able to walk & speak normally again… she suffers from neurological toe-walking. Amber also has a VERY RARE condition called (F-A-S) Foreign Accent Syndrome that affects her speech and some mobility cognition. (Due to trauma to or near the Broca's speech area of the brain).
(Seizure & facial tics at EmergiCare)
Momma Sharon has found a pharmacy to custom-make some of Amber’s medicines….(though the family is still waiting on Epi-pens to become available).
The Burts have located most of the medical equipment/support tools needed to help Amber.
Now….They just need the funds!...and SOON!
Amber gave up attending 2 separate schools, 2 internships & work when she became ill..... her semi-retired RN mother is her caregiver.
(Amber at an international Biodynamic Craniosacral training & conference shortly before taking ill.)
That’s where we come in!
Let’s come together to
“KEEP AMBER'S LIGHT BRIGHT!!!!!!”
(Getting psyched for surgery,...again!)
I asked Amber & her mother,
“What would make things better?”
Amber: ”Prayer!” She made one specific request: PRAYER!..please pray!!!
Mot said, “Power!”
The GoFundMe would provide funds to “power!”...
- Burt's travel & Amber's treatments/specialists in California, Southern Colorado,…. possibly Minnesota & Ohio.
-Physical therapy treatments (not covered by insurance) and at-home PT equipment & tools to maintain accomplishments..
-Amber uses/needs medical devices & machines (e.g. oxygen machine(s), heart-pacemaker monitor, blood monitor, home air & water purifiers, etc…)
-Access to proper medications. Currently, Amber’s medical protocols requires several thousand dollars a month.
-Supplemental foods/vitamins (Amber is having trouble eating/keeping food down.)
-Preparing one vehicle for Colorado winter-wheelchair challenges.
-Assistive devices to help maintain and preserve Amber’s abilities to walk, swallow, breathe, & use of her smaller joints as well as her gross motor skills.
-Amber needs a cane, wheelchair &/or a walker.
-She has braces for large joints, but still needs custom fit EDS support devices for her hands/wrists/fingers.
-Making the family home safer and more handicapped friendly for Amber.
-Pelvic Floor Therapy (PFT)...to repair, rehab, and maintain Amber's pelvic health after permanent damage after an negative experience with an inexperienced urologist.
-Services of a Medical-Social Worker (MSW) to help coordinate Amber’s care to find & leverage resources/strategies for Amber’s care. MSW's also help with mental health and trauma counseling.
The Main Goal is to Keep Amber At Home...THRIVING!
Having Amber undergoing treatment, getting support tools and an adequate supply of medication for Amber would give her mother peace of mind,…and maybe some rest.
(Weary,....yet positive!)
No matter how weird or winding the trail gets, ...even if her teeth loosen and her hair falls out,....even when she can't speak well, or goes totally mute...Amber never gives up!
(After the clippers!)
She asks that people who read her story or watch the video, please pray for her…..AND….please send in prayer requests so she can pray for them!
Amber has remained positive and generous through out the challenges and despite the pain.
She's awesome!
Amber is a blessing and joy to everyone.
Let's help her heal, grow and keep her beautiful AMBER LIGHT BRIGHT!!!!
(Cheerful even with a sling and a smashed hand!)
Thank you for taking the time to read Amber’s story. Please share this with your friends/family & anyone who could use a story of perseverance and the power of living on purpose.
Let’s link arms, & together we can help Keep Amber’s Light Bright!
Please, SHARE, "LIKE", & PRAY!…
Every donation goes directly to the Burt family.
May God Bless and Keep You.
Thank you!
Here are two videos on foreign Accent Syndrome that may help explain some of Amber's speech and mobility issues.
https://youtu.be/3KLPfdKPu8E
https://youtu.be/uLxhSu3UuU4
If you are interested in offline fundraising support for Amber (e.g. local Colorado-based events), learning more about donating goods/services /family needs…. or want more information about Amber’s story,
or
to connect with the Burt family, please contact:
“The Organizer,” Carolina Diaz-Granger.
Carolina & Alex Diaz, Missionaries,
Building Up Broken Walls Ministry Cartagena, Bolivar,
Colombia
(3rd day in hospital for pneumonia and pulmonary embolisms)
#KeepAmbersLightBright #NonElectricalSeizures #anaphyaxis
#WaspAllergy #PneumoniaOnRepeat #KALBSCOCO
#EhlersDanlosSyndrome #EDS #EDSGirls #PulmonaryEmbolisms #PacemakerGirl #NeedEpiPens #KidneyFailure #AML #LeukemiaFamily #BrainVM #VascularMalformation #PortwineStain #frecklesandcurls #ForeignAccentSyndrome #CanesWalkersAndWheelchairsOhMy #bonepain#CompoundRx #DiscontinuedRxs #asthma #RebelLungs #NeurologicalToeWalking #BrocasSpeechCenter #BornTBI #Ellen #TraumaticBrainImpaired #HeavyBurdenBloodClots #SilverRingsTherapy #PelvicFloorTherapy #BiodynamicCraniosacralTherapy #ManualPhysicalTherapy #AtHomePT #RNMom #ASL #FingerSpelling #HappyChocolate #LoveWildRice #TraumaWarrior #VenousInsufficiency #FloodTheEllenShowKALBSOCO
#CompressionHose #NotReallyBosnian #GoingTo Bosnia #SingingSeizures #ShinglesSuck # #FoodIsGoodMedicine #FourRestrictiveDiets #Protandim #GodIsGoodEveryday #Amen @KABLSOCO
Injections in the belly...helping others while in the hospital...poor circulation...keeping a sense of humor.
"Count your Blessings"
(Video of Amber's Journey)
Our sweet friend Amber needs our help!
The Burt Family in Colorado Springs, Colorado are fighting to keep Amber at Home!
She needs treatments, tools and services to remain at home in the care of her mother Sharon. If Amber does not improve substantially, she could be put into a care facility.
Amber Burt is having seizures, anaphylaxis (she just stops breathing) and she has a “heavy burden” of blood clots in her lungs.
One blood clot can be deadly. Multiple blood clots are a life threatening condition. Both of Amber’s lungs are FULL of blood clots (PE’s or pulmonary embolisms) that are not resolving even after intensive drug therapy. Unfortunately she is resistant to conventional treatment for pulmonary embolisms.
(Heart Pace-Maker Revision...AKA Fix the Mess!)The Burt Family needs funds to get Amber treatment in California ASAP!!! There is a specialist on stand-by willing to treat Amber as soon as she can book a flight. These treatments are crucial...and they are expensive, costing tens of thousands of dollars,.....and that is not counting the costs of her medications.
We hope to raise enough support so Amber can begin treatments before Christmas!
(Amber doing at-home lung care)Amber has been having seizures and asthma attacks at the same time. She is starting to lose consciousness and respiration.....(bad combination!)....
and there are **NO EPI-pens** available from ANY pharmacies!
She is also coping with venom neurotoxicity from recent multiple spider bites and wasp stings, (just millimeters from her spinal cord).….Amber has venom allergy.
("Mot, take the knife!"...trouble eating dinner)The Back Story
Amber and Momma Sharon (Mot) have been trying to do it on their own for so long. With the crisis onset of anaphylaxis and vomiting on top of 24-7 seizures, genetic migraines, heart-lung issues, history of kidney failure, inflammation of the malformation on her brain, muteness, unexplained bone pain and so many other issues… they are overwhelmed, its gotten too big.
Amber has been fighting & fighting, she’s exhausted. Its been a long road.
The good news is,
There is:
Help & Hope!
(The Botched Pacer Surgery)With the help of many medical and community hands, hearts and heads, the Burts have found treatment protocols for some of Amber’s genetic disorders and conditions! The treatments are out of state and not covered by insurance.
They have found help to address her connective tissue disorder (EDS), brain inflammation & breathing issues.
One EDS specialist, out-of-state doctor has reached out & agreed to treat Amber immediately!... offering to make room on her clinic calendar when Burts are set to travel.
The sooner Amber begins these treatments, the better!
Winter came early to Colorado and the cold weather is making Amber’s health even more unstable.
The Burt family have hope that there will be a breakthrough in the condition of Amber’s lungs with the treatment of her (EDS). There is also hope that she will be able to walk & speak normally again… she suffers from neurological toe-walking. Amber also has a VERY RARE condition called (F-A-S) Foreign Accent Syndrome that affects her speech and some mobility cognition. (Due to trauma to or near the Broca's speech area of the brain).
(Seizure & facial tics at EmergiCare)Momma Sharon has found a pharmacy to custom-make some of Amber’s medicines….(though the family is still waiting on Epi-pens to become available).
The Burts have located most of the medical equipment/support tools needed to help Amber.
Now….They just need the funds!...and SOON!
Amber gave up attending 2 separate schools, 2 internships & work when she became ill..... her semi-retired RN mother is her caregiver.
(Amber at an international Biodynamic Craniosacral training & conference shortly before taking ill.)That’s where we come in!
Let’s come together to
“KEEP AMBER'S LIGHT BRIGHT!!!!!!”
(Getting psyched for surgery,...again!)I asked Amber & her mother,
“What would make things better?”
Amber: ”Prayer!” She made one specific request: PRAYER!..please pray!!!
Mot said, “Power!”
The GoFundMe would provide funds to “power!”...
- Burt's travel & Amber's treatments/specialists in California, Southern Colorado,…. possibly Minnesota & Ohio.
-Physical therapy treatments (not covered by insurance) and at-home PT equipment & tools to maintain accomplishments..
-Amber uses/needs medical devices & machines (e.g. oxygen machine(s), heart-pacemaker monitor, blood monitor, home air & water purifiers, etc…)
-Access to proper medications. Currently, Amber’s medical protocols requires several thousand dollars a month.
-Supplemental foods/vitamins (Amber is having trouble eating/keeping food down.)
-Preparing one vehicle for Colorado winter-wheelchair challenges.
-Assistive devices to help maintain and preserve Amber’s abilities to walk, swallow, breathe, & use of her smaller joints as well as her gross motor skills.
-Amber needs a cane, wheelchair &/or a walker.
-She has braces for large joints, but still needs custom fit EDS support devices for her hands/wrists/fingers.
-Making the family home safer and more handicapped friendly for Amber.
-Pelvic Floor Therapy (PFT)...to repair, rehab, and maintain Amber's pelvic health after permanent damage after an negative experience with an inexperienced urologist.
-Services of a Medical-Social Worker (MSW) to help coordinate Amber’s care to find & leverage resources/strategies for Amber’s care. MSW's also help with mental health and trauma counseling.
The Main Goal is to Keep Amber At Home...THRIVING!
Having Amber undergoing treatment, getting support tools and an adequate supply of medication for Amber would give her mother peace of mind,…and maybe some rest.
(Weary,....yet positive!)No matter how weird or winding the trail gets, ...even if her teeth loosen and her hair falls out,....even when she can't speak well, or goes totally mute...Amber never gives up!
(After the clippers!)She asks that people who read her story or watch the video, please pray for her…..AND….please send in prayer requests so she can pray for them!
Amber has remained positive and generous through out the challenges and despite the pain.
She's awesome!
Amber is a blessing and joy to everyone.
Let's help her heal, grow and keep her beautiful AMBER LIGHT BRIGHT!!!!
(Cheerful even with a sling and a smashed hand!)Thank you for taking the time to read Amber’s story. Please share this with your friends/family & anyone who could use a story of perseverance and the power of living on purpose.
Let’s link arms, & together we can help Keep Amber’s Light Bright!
Please, SHARE, "LIKE", & PRAY!…
Every donation goes directly to the Burt family.
May God Bless and Keep You.
Thank you!
Here are two videos on foreign Accent Syndrome that may help explain some of Amber's speech and mobility issues.
https://youtu.be/3KLPfdKPu8E
https://youtu.be/uLxhSu3UuU4
If you are interested in offline fundraising support for Amber (e.g. local Colorado-based events), learning more about donating goods/services /family needs…. or want more information about Amber’s story,
or
to connect with the Burt family, please contact:
“The Organizer,” Carolina Diaz-Granger.
Carolina & Alex Diaz, Missionaries,
Building Up Broken Walls Ministry Cartagena, Bolivar,
Colombia
(3rd day in hospital for pneumonia and pulmonary embolisms)#KeepAmbersLightBright #NonElectricalSeizures #anaphyaxis
#WaspAllergy #PneumoniaOnRepeat #KALBSCOCO
#EhlersDanlosSyndrome #EDS #EDSGirls #PulmonaryEmbolisms #PacemakerGirl #NeedEpiPens #KidneyFailure #AML #LeukemiaFamily #BrainVM #VascularMalformation #PortwineStain #frecklesandcurls #ForeignAccentSyndrome #CanesWalkersAndWheelchairsOhMy #bonepain#CompoundRx #DiscontinuedRxs #asthma #RebelLungs #NeurologicalToeWalking #BrocasSpeechCenter #BornTBI #Ellen #TraumaticBrainImpaired #HeavyBurdenBloodClots #SilverRingsTherapy #PelvicFloorTherapy #BiodynamicCraniosacralTherapy #ManualPhysicalTherapy #AtHomePT #RNMom #ASL #FingerSpelling #HappyChocolate #LoveWildRice #TraumaWarrior #VenousInsufficiency #FloodTheEllenShowKALBSOCO
#CompressionHose #NotReallyBosnian #GoingTo Bosnia #SingingSeizures #ShinglesSuck # #FoodIsGoodMedicine #FourRestrictiveDiets #Protandim #GodIsGoodEveryday #Amen @KABLSOCO
Injections in the belly...helping others while in the hospital...poor circulation...keeping a sense of humor."Count your Blessings"
Organizer and beneficiary
Amber Burt
Beneficiary