RareShare: Do You Think You’ve Changed since You or Your Child’s Rare Diagnosis?
September 18, 2013
How has your or your child’s rare diagnosis (or undiagnosed condition) changed you as a person? What do you feel you have learned from this experience that you wouldn’t have before? How has this changed your expectations, goals, and understanding of human nature?
All the times when I thought I may not make it made me focused on what I want from life and what is most important to me.– Joanna T.
Before Rebekah, I was an on-the-go person. I’ve had to learn to just sit and enjoy the fact that she is still here. She has Partial Trisomy 15 and is the only one in the world to have ever had her exact duplication and live past birth. They gave her a week to live. She is 9 months old today. Living with a miracle would change anyone.
My daughter has given me a voice! I’ve always been a very shy, quiet person. I never felt I had the ability to fight for myself. I would just give in or give up. Once my daughter came along, I gained a confidence I never knew I had. I WILL speak up for her, I WILL fight for her, & I WILL advocate for her. I will be HER voice!
I am more understanding and aware of special needs children and feel frustrated when others dont understand. But its nothing I can’t handle even if I feel I cannot handle it at times.
We set up a charity to help other families. As we did not want people to suffer like us.
It definitely has changed me! I get very frustrated at not being able to join in and do things that everyone else can do but having mitochondrial disease has made me a stronger person and helped me to appreciate the little things in life that we sometimes take for granted.
Spend time just being with the ones I love, not doing but just being… Drinking in who they are and how I feel with them. Also, I realize I know nothing about what is going on “behind the scenes” with anyone… So I try to have more patience!
Definitely has motivated me to get out of my “comfort zone” . Last night we put on a “womanless beauty pageant” fundraiser for Cure AHC Do you like my contestant entry?
I have learned that some if us truly are actually very unique to many others on Earth!
Realize that life is fragile and that no matter the size of their foot print, they can make such such an impact on so many people. Just because someone doesn’t look sick doesn’t mean they are not suffering a horrible disease. True heroes are these kids who inspire regular people to better themselves and become a better person.
It has opened our eyes widely. Feel so much more knowledgeable. Made us a strong family. We appreciate all the small steps, being huge accomplishments. We embrace the uniqueness of all around us!
I take each day as I find it if I can’t do something I try another way maybe I won’t be able to but it’s always worth trying.-Fay W.M
It was 12 yrs to this day, in the wake of 9/11..my 12 month old baby, who I thought was healthy was admitted for an enlarged liver. I was happy and sad at the same time, at times I wasn’t sure if I could handle the days when he wouldn’t eat and had to inorder to survive. I’ve learned in your darkest hour, to never give up, the strength will come.
Bills and money problems will wait babies won’t! I’ve learned what’s really important! I love God and my family…..best medicine there is for an illness such as mine!
How hasn’t it changed me????
I have 3 rare disorders, and am a single mom of an 8 year old with no support. So many times I’ve wanted to just quit fighting. Until my son was diagnosed recently. It gave me a whole new reason to keep on pushing.
Those of us who have a dx of a rare disease are compelled to become our own best advocates. We quickly learn that we must educate ourselves and stay informed. Selecting the right healthcare provider is critical. And, not enough can be said for joining information-sharing and support groups.
It opened our eyes…We don’t sweat small things, experience as much a possible and got involved by starting a non profit to fund a cure (ataxia telangiectasia) & help families with medical payments.
I have compassion for people. And cherish even bad days cause you’re living &breathing. I am kind & helpful to others & am not judgmental.
When our grandson was born (with MPS1-Hurlers), our son said, “I think he was born ‘wise’.” I have learned that wisdom is so much deeper than being smart. I have learned that Austin, at age 8, is more anything positive than I could ever dream to be. And I have learned that our family truly knows what love is all about.
To write down all of the lessons this “syndrome” and the years its taken to find a diagnosis, would take to long a time n way to much space. Instead, I will tell of the most important, to me n e way… Where there is life, there is hope, and where there is faith there is peace. I don’t know who said this, but they “hit the nail right on the head”. To live with purpose has become my mantra.
It’s not about me….it’s about her… my grandkid Torie!
My daughter has given me so many life lessons. She is stronger than I could ever be, and she has given me strength. She is a thriver, never ever letting her disorder define her, SHE defines who she is. I learn from her how to live, dream and never stop.
I hang onto 3 things my Faith, Love, Hope. I believe in medicine, and god works through doctors, medicine to help & heal people. I keep praying & wishing for a miracle for my daughter.
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