My family and I used to manage a greeting cards and gifts company to raise awareness for my rare disease, Fibrodysplasia Ossificans Progressiva (FOP). My life revolved around planning my new card designs, watching my dad scan, print, and prepare the cards, and helping my mom package and label our products for the various craft fairs we attended each year. As stressful as it was, the decision to close the business in 2010 (after 10 years) was a difficult one to make. Even though I hadn’t always enjoyed every aspect of keeping up with a business, I missed having that type of lifestyle when it was over. I eventually stopped drawing and never seemed to be able to “find the time” to pick it up as a pastime.
…Until now. About a week ago, I was looking up one of my mom’s poems on my old website and noticed that the centered text somewhat formed the shape of a vase. That was all it took to inspire the artist in me; I immediately had a vision of what I wanted to create in honor of today’s FOP Awareness Day.
My mom wrote Always Have Hope a year or so after my FOP diagnosis in 1999:
When you struggle for answers,
and are trying to cope,
Believe in your heart…
Always have Hope!
Hope takes you further, is ready to go,
Hope holds the vision,when others say no.
Hope is the river,strong, full and deep
Hope knows no limits, no mountain too steep
Hope for a treatment, hope for a cure,
Believe in a miracle, holy and pure.
Hope hangs on, believes in the best
Hope is a journey, each minute a test.
When your spirit is weakened
and you’re trying to cope,
Believe in your heart..
Always have hope!
The words to this particular poem have been a part of my life ever since I was able to fully comprehend them. They’ve been beside me through every obstacle, encouraging me to remain hopeful and keep the faith. We’ve had a framed copy in every Connecticut house we’ve lived in, and we’d sell wallet-sized versions when we brought our products to craft fairs. My mom has told me that the sentences simply “came to her,” but I can’t imagine how difficult they must have been to actually live by. It inspires me that she found the strength within herself to write with such grace and eloquence after my unfathomable diagnosis.
Ten years ago today, April 23, 2006, the discovery of the ACVR1 gene mutation that causes FOP was announced to the public. It was a huge research breakthrough for all the scientists at the University of Pennsylvania School of Medicine who had been working tirelessly for years. The gene discovery announcement brought an incredible amount of hope to our entire community: the 800 people worldwide currently diagnosed with this disabling condition, our families and close friends, and all of the amazing people devoting their lives to finding a cure.
The researchers have made a lot of progress since the discovery and are now working to hopefully administer a drug, palovarotene, as a new treatment to prevent new bone growth in both adults and children with FOP. We’ve come a long way!
Hope for a treatment, hope for a cure... Always have hope.
Hi Jasmin,
It’s Lu here, from H&H. How in the world are you? LOVE this post…both your Mom’s incredible poem (and the journey behind it) and the picture you’ve accentuated it with. Was going thru my pictures awhile ago, and there you were, grin. You’ve continued to be in my thoughts and prayers thru the years..
Much love and warm support steadily flowing along with Prayer-Songs,
“Ms Lu”
Lucel-Melody Wings
Hi Jasmin, I stumbled across your blog today, you are an inspiration and have a beautiful soul! :-)
I’m posting this link in hopes that this info may be of help to you.
I’m not affiliated with anything, just hoping to be of help!
http://www.herballegacy.com/Complete_Tissue.html
http://herbsfirst.blogspot.com/search?updated-max=2016-06-14T12:40:00-06:00&max-results=10&m=1
Dear Jasmin,
I pray that God would turn things around for you. Just published my book “His Legacy of Love” on Amazon under Christian inspiration. God bless you!!
Lisa Hamilton
Jasmin,
Was so nice to meet you. Love your blog; read all pages. Such inspiring spirit. Will check out your musical recommendations. Meanwhile, I would like to recommend “Lewis and Clark” by Tommy Emmanuel as well as his TEDx talk/mini-concert. Hope you enjoy.
Best wishes,
Scott
Hi Scott! I apologize for this delayed reply. I loved meeting you and really enjoyed the panel and overall experience. I hope our paths cross again! Thank you so much for the recommendations; I will definitely check them out. I also just updated my song list!
Hi Jasmin, attitude has made a huge difference in the way you positivically turn the seemly heartbreaking turn of event into an avenue to inspire millions. I really love the spirit shown. I will like to offer help that brings real peace from God about a world where no resident will say I am sick. I received great help when I became weighed down with the ugly situations in the world at large. My longtime unquenchable question WHY was answered. If you are the religious type, please read Jeremiah 29:11, Isaiah 33:24, Daniel 2:44 and Revelation 21:3-5. If you are comfortable with giving me an e-mail address I can send interesting articles to, that will help greatly too. May God help us all as we await the arrival of His kingdom away from this Satanic system.
Regards
This is inspiring Jasmin! From many years ago I have saved one out of each of your artistic note cards to admire for myself. I am picturing them in my mind as I write this, heart of rainbow colors, tiger with blue background, flowers…and all having your adorable picture, two photos from different years, with a write up on the back cover. I also have your fabulous Mom’s Hope missive, a psalm coming straight from her heart. I love your latest artistic picture shown here, the vase filled with Hope and holding such colorful, blooming flowers. It has such profound meaning! I would like to purchase a copy or copies, whatever possible method you might make it available. Sending you love and hugs!
Thank you for your kind words!! I’ll be in touch about possibly purchasing a copy! xoxo
JASMIN, my goodness, what a surprise this article is and the artwork as well. Thank you for your honesty and your decision to share your deep feelings and reflections. It is a great help to others who may have the diagnosis and a great help to those who wish to understand more; those who love you, as I most certainly do. Precious friend, I am so incredibly proud of you. I hope we will see each other when you return to California. I shall get up at the crack of dawn to find you…strolling on the sand. What fun we will have! I love you, Darling, you are beautiful, smart and wise. Please tell your dear mother I found her poem quite touching. xoxoxo till I see you in sunny California! C’mon, C’mon, hurry out!
Thank you!!! I love you and am so excited to see you!!
It’s such a beautiful piece, Jasmin! Making the greeting cards was fun, but it was a lot of work for all of us, for sure. I will always have hope, and I hope you always know that you’re a blessing to everyone.
Love you!! ♥