Rally for Danielle
Donation protected
Meet Danielle, a fierce advocate for invisible illness and chronic pain awareness, with the heart and courage of a knight. She loves plate armour, LARPing (Live Action Role Playing), creating art, singing opera, and writing. She looks like any other 19 year old. Looks can be very deceiving. You can't tell she has a mobility impairment, unless you notice her custom knee braces. You can't see her multiple medical conditions, both rare and potentially life-threatening. She doesn't dwell on the fact that over the past several years her quality of life has rapidly declined, and that she is always in pain, always exhausted, and that her health is a delicate balancing act. Her social life now consists of ambulance trips, hospital admissions, and specialist appointments. You wouldn't guess that she's already had to give up her dream of being an opera singer the very same month she was to apply to Fountain School of the Performing Arts at Dalhousie University. In spite of the long medical journey Danielle is having, she continues to strive to do her best, at home, in her community, and at college. Sincere, loving, and extremely creative, Danielle always has a smile, and meets her challenges head-on with grace and determination.
One of the conditions Danielle suffers from is an immune disorder called Mast Cell Disease, of which there are many types. It is rare, potentially life-threatening, and has no cure. Mast Cell Diseases are not well-known, and the specialists and labs in Nova Scotia lack the knowledge to make an accurate diagnosis. It's critical to be typed, as some forms are, or can progress to malignant.
It was recommended by several specialists that Danielle be referred to a world-renowned expert in Mast Cell Biology, at Brigham and Women’s Hospital in Boston, Massachusetts. Her specialists believe this trip is essential to improving Danielle’s health, and overall quality of life. Our Provincial Government has deemed this trip medically necessary and will be covering most, but not all of the expenses for this trip for Danielle, and one medical escort. Funds raised will go towards accommodations, food, transportation, passports, prescribed medications, lost wages, etc.
As you can imagine, medical expenses have been overwhelming through the past several years. I won't call them a burden, so much as an investment in ensuring Danielle has her best chance at success in life. I think she's destined to make a difference, and I hope you do, as well.
Any contribution, be it monetary, or by sharing Danielle's story, would be greatly appreciated.
Thank you for taking the time to read about Danielle.
Sincerely,
Tanya Brown (Danielle's Mom)
A little more about Danielle
Danielle's diagnoses include; Mast cell disease, hypermobile Ehlers-Danlos Syndrome, adrenal insufficiency, dysautonomia, asthma, and ADHD.
Extremely active in the community, Danielle raises awareness of chronic pain and invisible illness. She is a co-facilitator and IT Coordinator for Atlantic Ehlers-Danlos Syndrome Society , a Halifax-based, non-profit organization for persons affected with one of the Ehlers-Danlos Syndromes or Hypermobility Spectrum Disorders.
In 2017, Danielle held a solo art exhibit, "Invisible: Portrayals of Chronic Pain and Invisible Illness" at the Pain Management Unit of the QEII, raising funds for the patient art therapy program. This exhibit brought about a change in how nursing students are taught the patient experience of pain, and has become a model for discussion in the Dalhousie School of Nursing curriculum.
To learn more about Danielle's journey:
https://www.daniellerobitailleart.com
From chronic pain to canvas: Halifax artist’s personal experience helps put spotlight on ‘invisible illness’
Halifax Heroes: The pain of her invisible illness through art – and a smile
One of the conditions Danielle suffers from is an immune disorder called Mast Cell Disease, of which there are many types. It is rare, potentially life-threatening, and has no cure. Mast Cell Diseases are not well-known, and the specialists and labs in Nova Scotia lack the knowledge to make an accurate diagnosis. It's critical to be typed, as some forms are, or can progress to malignant.
It was recommended by several specialists that Danielle be referred to a world-renowned expert in Mast Cell Biology, at Brigham and Women’s Hospital in Boston, Massachusetts. Her specialists believe this trip is essential to improving Danielle’s health, and overall quality of life. Our Provincial Government has deemed this trip medically necessary and will be covering most, but not all of the expenses for this trip for Danielle, and one medical escort. Funds raised will go towards accommodations, food, transportation, passports, prescribed medications, lost wages, etc.
As you can imagine, medical expenses have been overwhelming through the past several years. I won't call them a burden, so much as an investment in ensuring Danielle has her best chance at success in life. I think she's destined to make a difference, and I hope you do, as well.
Any contribution, be it monetary, or by sharing Danielle's story, would be greatly appreciated.
Thank you for taking the time to read about Danielle.
Sincerely,
Tanya Brown (Danielle's Mom)
A little more about Danielle
Danielle's diagnoses include; Mast cell disease, hypermobile Ehlers-Danlos Syndrome, adrenal insufficiency, dysautonomia, asthma, and ADHD.
Extremely active in the community, Danielle raises awareness of chronic pain and invisible illness. She is a co-facilitator and IT Coordinator for Atlantic Ehlers-Danlos Syndrome Society , a Halifax-based, non-profit organization for persons affected with one of the Ehlers-Danlos Syndromes or Hypermobility Spectrum Disorders.
In 2017, Danielle held a solo art exhibit, "Invisible: Portrayals of Chronic Pain and Invisible Illness" at the Pain Management Unit of the QEII, raising funds for the patient art therapy program. This exhibit brought about a change in how nursing students are taught the patient experience of pain, and has become a model for discussion in the Dalhousie School of Nursing curriculum.
To learn more about Danielle's journey:
https://www.daniellerobitailleart.com
From chronic pain to canvas: Halifax artist’s personal experience helps put spotlight on ‘invisible illness’
Halifax Heroes: The pain of her invisible illness through art – and a smile
Organiser and beneficiary
Tanya Brown
Organiser
Timberlea, NS
Danielle Robitaille
Beneficiary
