What Are You Grateful For: Our Rare Disease Community

November 28, 2013

We took to our Facebook to ask: What are you most grateful for this year? Unlike many families who may struggle with their own set of challenges, parenting a rare disease child or being a rare disease patient can add heaps of stress and sadness that most are unfamiliar with. Today we recognize that for however great our troubles seem– our ability to recognize and celebrate those small triumphs in life is unparalleled. Thank you to all who shared their wise words and exclamations of gratitude! Please feel free to comment below with your own responses to what you are most grateful for this year.

Helene G: This disease (Scleroderma) can take things from me, but will never take away my faith and hope. I am thankful for that.

John P: People who were once strangers that I have never actually met, but I now consider very dear friends. Facebook has shown me that there are a LOT of people out there who care.

Hannah NG: Advances in technology, kindness of medical staff, and the support from family, friends and people I never knew before. I thank God for each day I get to spend with my son.

Ashley AS: Everyone who has made a positive impact on my son’s life, especially his pediatricians at Fort Sill Oklahoma and speech therapist in Lawton Oklahoma! Also our case manager at Fort Sill and at Fort Hood Texas!

Jessica H: I am grateful for the fact that my daughter has touched so many people’s hearts and lives, and it has shown us that there is still kindness and generosity in people in this world.

Serena CN:  She is running!

Laurie C: I am grateful for every day I spend with my daughter as I was told her life expectancy was seven and she is now a strong, brave, witty, beautiful 15-year-old. She is my hero. I am grateful for all the memories we’ve built this year. I am grateful that although tomorrow is promised to no one , that I have today.

gratitude 3Traci B: That my son is at this time still in remission and doing well and that his school is providing a vast amount of therapies for him.

Janie MS: Amazing friends who bring me meals and listen to me gripe. My best friend just called in a favor and got my family a comped hotel suite for my daughter’s upcoming procedure.

Andrea L: My wonderful patient advocacy group! The unique opportunities that being a rare disease patient has given me to interact with other patients and parents. I got to go to D.C. to lobby! I never would have done that pre-diagnosis

Caroline B: So grateful that my grandson with 22Q got through his second open heart surgery!

Amy K: My soon to be 12 year old son, Zain, has Hunter Syndrome/MPS II. He was diagnosed just before the age of six. Then, once researched, I fully expected that by this age Zain would have regressed, both physically and neurologically. By the grace of God, aside from a moderate degree of joint stiffness, he has not only remained stable, but continues to improve neurologically. I simply can’t thank God enough.

Billie H: So blessed and thankful to have the most phenomenal daughter and forever friend….she never gives up and is always open to support and encourage others with a disorder…her faith and walk with God is such a testimony!

Lisa B: My son has Pelizaeus-Merzbacher Disease (PMD, for short). The morbidity rate is age ten…this year, he turned TWELVE!!! He’s taught me what REALLY MATTERS in life. I am FOREVER grateful to be his mommy.

Diane H: Meeting other people and sharing stories

Duke Y: I’m thankful for my wonderful wife that helps me get my socks on, because of scleroderma!

Robin AS: For the amazing people we’ve met who turn their burdens into ways to give to others. My daughter and I have been diagnosed with a handful of rare disorders this year, and it has been amazing how many people have reached out and made huge differences in our lives. Also, for the internet, as this is how I met most of them. Lastly, for the amazing doctors who never give up and go above and beyond to make our lives better in any way they can.

Shari MK: Grateful that my daughter has reached adulthood and turned 18 while living with a rare disease that presents gratitude1daily challenges. Also VERY grateful for the support and love of other families whose loved ones are living with the same conditions.

Jessie R: I am thankful each and every day that we are here dealing with the issues that come with being a special needs family. Yes, things get hard and at times feel unbearable. But the alternative truly is unbearable.

Syn H: I’m grateful a medical professional finally listened to me, thinks outside the box, did some genetic testing and has finally started formulating a treatment plan for me and my children. It’s been a long road behind with docs only wanting to throw pills at the symptoms rather than being detectives that figure out the root cause. The Change Center for Health and Vitality in Little Rock, Arkansas has been amazing!

Sandy PW: I thank God every day for my life here on earth with hope and a positive OUTLOOK ON LIFE.

Tammy D: I’m grateful for my brave daughter and for her ability to adapt with the diagnosis and treatment of Turner syndrome. I am thankful for the very human gift of coping. I am humbled by all of our family, friends, and new support family who do not minimize our concerns and always recognize our desire to do best by our kiddos.

Veronica M: My husband’s heart pressures have stabilized, and he is able to carry himself through a full day (Pulmonary hypertension, four years)

Natalie P: As a parent, I am blessed that we had an ABDA WALK on the west coast, and for the medical community at XOMA and OTHERS for teaching and listening!!!! Thank you to the small yet might ABDA.

Ngozi O: I am grateful to God for protecting my son who was born with a medical condition called sickle-cell anemia and developed a mini-stroke at the age of eight years old. For everyone in the hematology team.

Lara W: I am grateful for my son’s quick diagnosis, especially because all was discovered by fluke, and that he is only mildly affected by Juvenile Pompe and has a treatment available to him.

Karen A:  Research, the advances in cystic fibrosis treatment. So blessed with our care team.

Michelle H: For the metabolic doctor/nurse! For all the smiles on my daughters face and love that comes with it!

Lisa J: I’m grateful that my daughter is getting better at advocating for her own needs. I can’t always know what her pain or limits are and this year she has been able to speak up and really push me and her docs to treat her ailments when she can’t manage it for herself.

Erin B: Thankful for the amazing doctors that we’ve met during our journey, plus the wonderfully caring nurses, therapists, and teachers. While this journey can be quite challenging, the people that you meet are simply wonderful and you feel lucky to have the opportunity to have them in your and your child’s life.

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