Wow. I can't believe it's been a year since all this began. What a long strange year it's been..

In September of 2012, our normal, healthy, active six-year old son Daniel started acting very strangely. He would cry when I took him to Kindergarten saying, "I just want to be with you. I just want to snuggle you." We'd never experienced this kind of separation anxiety before, and kept reassuring him that he was fine. He also started complaining his side hurt, although there was nothing to see, and I again reassured him he was fine.
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After a few weeks of this, we noticed a strange rock-hard lump on his left rib cage. The lump didn't really hurt him that much, but it baffled me why it was there. I showed it to my physical therapist friends who said it was probably just a swelling from playing too hard and should probably just get it looked at. The pediatrician didn't know what to make of it and ordered an x-ray that came back normal. He said just to watch it, and if it changed to take him to an orthopedic doctor. The lump actually went away one day, and I remember thinking, "Well that was weird, but at least it's gone." 
A week later it showed up again higher in his shoulder and much larger. This is where I have to sound my 'woo woo' alarm. For those that know me, I've been speaking to both of my deceased parents (mom and step-dad) for years though a medium. In early September, before any of this happened, my dad started a reading saying he wanted to talk about Daniel as he was having a major auto-immune reaction. At the time, I didn't know what questions to ask as he had no symptoms, but now all my efforts where in looking at this as an auto-immune response. I tried to explain the source of my information without sounding crazy, and my pediatrician ordered lab work that all came back normal. The orthopedic doctor took more x-rays that didn't show anything. By now the swelling was huge covering most of his upper left back, wrapping around his chest and swelling up his abdomen. We had an ultrasound and it showed the swelling as "dramatic edema." I was in total panic, but not having a clue what to do for him. Daniel was miserable, staying home from school and we were trying to reassure him that he was ok.

I scoured the internet for clues, but everything was coming up as tumors. I insisted we look at his immune system, and the only way to get in front of the pediatric rheumatologist was to take him through the ER at Texas Children's Hospital. My pediatrician agreed and ordered an MRI, and on Friday October 26th, 2012 I got up at 4:00am to get ready to take him in. I Googled to see what we'd be looking for in an MRI, and looked at all the symptoms one more time. 

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God somehow put me on a webpage (I still don't know what I clicked to land on it), and the banner image totally took my breath away. It was the picture of the crooked big toes that are the telltale sign of FOP...Daniel's toes. I knew in an instant this was it. It was much bigger than anything I could have ever possibly imagined. I woke up my husband and in disbelief we read the webpage. It's a great website full of fact and pictures of the progression of FOP. But for terrified parents just finding this on our own, it was like a horrific nightmare. Dr. Kaplan (the brightest angel on Earth!) has his HOME number on the website. I called and woke him up, crying, babbling, going on about being a mom in Houston and I think my child has this and I'm about to take him to the ER right now but I think he's got this thing on your website and his big toes are crooked and he has hearing loss and all the things you say about FOP but I don't know what to do and you have to help us...

Dr. Kaplan graciously listened, asked a lot of questions, and requested some photographs and x-rays. I happened to have all of the information, and within 2 hours he emailed me back saying he had no doubt of this diagnosis. He said to stay home, don't go to the ER as they won't know what to do with him, and he contacted my pediatrician. We told Daniel, and he was very confused not to be going to the hospital. But we told him we'd found a doctor that knew what was going on with his back, and that we just needed to rest and stay home. 

I have never cried so hard as I did that day. My sweet husband Jeff was so strong and said, "Well at least he's here with us. It's not like he got hit by a bus. It's going to be ok." My friend Kira came over and we got on our knees and prayed. We prayed for him to be healed, for us to have the strength to go through this with him, for our family to endure this with grace and love.

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On 12-12-12, Daniel and I flew to meet Dr. Kaplan in Philadelphia. He was so warm, compassionate, and dedicated to helping us and all the others with FOP. The genetic testing has confirmed Daniel has the classic FOP mutation.

 


Comments

Michelle L.
10/11/2013 11:28pm

We love your family and continue to pray for Daniel and for your family. Please Lord....please.

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10/29/2013 11:19am

Thank you for your sweet note. Thinking of you guys all the time. :) Much love,
Tiffanie

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Sandy
10/12/2013 12:43am

Honey, since the first time you posted about your sweet little angels illness, I too have been praying and thinking about you and your family. I too have asked your Mom to please help you. Send us some message, a cure. I thought of your Mom's sister, wondering if it is possibe that she may have been misdiagnosed so long ago. I look at pictures sometimes and wonder how things would be had she been healthy. I know she was so distraught over losing her little sister and just couldn't cope with everything else in her life at the time. Prayers have to be the answer. I just wish I could wrap my arms around you both and make it all go away. Though time and circumstances and life in general have seperated us all, that doesn't mean I love you or all of you any less. Stay stong honey. If you need to talk, just contact me any time. Night or day. <3

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10/29/2013 11:23am

Hi Sandy! Great to hear from you. I actually talked to my mom again this morning. She's fine and has the best parenting advice from Heaven! My Mom and Dad are working so hard to help us find a cure (actually some really cool stuff that's never been thought of before). Our prayers will be answered I have no doubt. Yes, Mom had a lot of losses and it was so traumatic. But my Aunt Penny had rheumatoid arthritis - it wasn't FOP for sure. This genetic condition is a random mutation and doesn't get passed down like that (unless Daniel has kids and they have a 50/50 chance of getting it). I feel your love and prayers, so thank you so much for sending :) Love to all of you, Tiff

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10/12/2013 4:15pm

Hi Tiffanie, thanks for sharing Daniel's story. Dr. Kaplan really is fantastic, isn't he? We've gone to him for help so many times over the years since Miranda's diagnosis at age 2 (she's now 8), and he never fails to respond to panicked questions right away... Are you coming to Florida in November? Sure hope so, and if you do, we'll see you there!

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10/29/2013 11:39am

Hi Karen! Thanks for your note. Kaplan is the BEST! We have no idea how blessed we all are to have him, truly!

We had mixed feelings, but we have decided not to attend the FOP conference this year. It's so lovely to connect to everyone through FB - everyone has been so positive and supportive. But we decided it would be too much for our sensitive guy right now to bring him in person. Hope you all have a blast at Disney!!

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Marian Granaghan
10/12/2013 4:36pm

Totally the same that we went through same manifestation.!

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10/29/2013 11:42am

Hi Marian, thanks for your note. It's so interesting that so many of us have such similar stories. I'm happy to know we're not alone and can connect with other families going through exactly the same thing. Many blessings to you all! Much love, Tiffanie

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Stefan Ruoss
10/13/2013 8:19am

Thinking about Daniel s FOP makes me cry and questioning Gods plan. Still, he is such a wonderful kid with an outstanding spirit. I am thinking of y'all daily and include you in my prayers. Be strong.

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10/29/2013 11:43am

Hi Stefan! Thanks for your sweet note. Love you guys so much :)
Yes, he's wonderful and doing a great job at being a happy kid! Thank you for your prayers - they are being answered! Love, Tiff

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Robin Gambaiana
10/13/2013 8:46pm

Thanks for sharing Daniel's story! So many of us have much the same story about FOP. Our grandson, Lincoln is 7 and was diagnosed at 2 1/2.

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10/29/2013 11:49am

Hi Robin. Thanks so much. I saw you guys went to the Zipper Q BBQ. Looked like a great event. I hope and pray Lincoln is doing great. He's such a cutie :)

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10/14/2013 5:22am

Hi Tiffanie, Karen told us about your blog on Facebook. Our son Yorick also has FOP, he is 9 years old now.
We found out about FOP through a website, just like you, and took the info to our paediatrician. Luckely he didn't think I was some "overconcerned mum"... We feel blessed that Yorick didn't have to go through surgery or biopsies because we learned about FOP in time, and I also still feel that "someone was guiding my hand" when I clicked on that right link...
We've learned over the years that FOP can be part of your life and still enjoy it to the fullest. Or maybe enjoy it even more, knowing not everything it for granted. Good luck to you and your family.

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10/29/2013 11:52am

Hello Saskia. I just sent you a FB friend request. Thank you for your story. So very happy Yorick didn't undergo anything invasive either.
You are so right about living life large, even with FOP. We do appreciate every minute more, and I'm learning about love and patience in a new way I would never have known before. I do realize how precious every moment is! Thank you!! Best to you all. Tiffanie

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Heather
11/12/2013 8:05pm

A year went by so quickly. I hold my superman close in my heart everyday and am SOOOO proud of how he is thriving, reaching beyond, finding joy and just purely embracing life!! He's got his amazing mama for a role model. Xo

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Steph
03/31/2014 8:35pm

I miss seeing my sweet sweet Daniel, and his big brother too of course ;) I feel so lucky to have been a part of the Williams family, and to have had the chance to share so many sweet snuggles with Daniel. I think of you guys all the time and I am always sending love your way!!!

xoxoxo

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