My oldest daughter has a rare health condition called Ehlers Danlos. No cure. Had it since conception. The disorder causes many symptoms. Affects her skin, vascular system, ligaments - pretty much everything. It causes poor wound healing. She is double jointed in every joint. Scoliosis. Chronic pain and fatigue.
She’s a really good person. Never complains. Smart as a tack. Got a couple college degrees. Wanted to be a doctor but knew her body wouldn’t hold up to the process so became a nurse instead. Because her health, might not be a 40 year career in the work force. She’s very religious. Currently helps at a women’s crisis center. I saw a box or granola bars on the floor of her car, and I said WTF is that doing there. She said she hands them to the homeless she sees at the stop lights. Buys granola bars for others while she has pain and student loans herself. That’s my daughter.
She has had many many health related issues from simple things like tripping and falling ripping open her skin to the tune of 10-40 stitches on her knees. Happened 17 times. Not from being clumsy. A simple trip and fall. Dislocations in her ankles, knees, shoulders and hips. She has worn a back brace most of her life. Because of her health situation, she has never even had the simple pleasure of even riding a bike in her life.
Anyways, the back brace for her scoliosis has caused other concerns and can no longer be used.
She got 4 doctors opinions and elected to have her pretty much entire spine fused together. Not sure how she is gonna tie her shoes. Because of her disorder with poor wound healing, she picked probably one of the best back surgeons who has a least invasive back surgery methods he helped developed.
So I’m sitting here at Cedar-Sinai Hospital in LA today while they do the first surgery lasting 7 hours. She has another longer surgery on Monday to install all the screws and rods along her spine.
I came outta retirement in Flagstaff to come down to work in Phoenix to pay for this surgery as this doctor costs way more than what our double insurance coverage pays. I haven’t been up to my house in 2 months because I’m down here working and living in a rented place. But it’s not about me. I would do whatever I can do to make her life better. If I could take her pain, I would in a second.
She is engaged to be married this November.
Anyways, she could use all the prayers you guys could send her way.
Thanks
Tough girl you have there.
She's added to the list.
Tough girl you have there.
She's added to the list.
Yep! Amen!
Prayers for a full recovery.
You got it, Flagstaff. I hope the steel they put in her back is half as strong as what sounds like is in her soul. You raise a good person. Best wishes to her going forward.
She is a very courageous, impressive young lady sir! I will pray for her and you.
Certainly! Good on both of you for doing what has to be done!
Thoughts and prayers from Iowa.
God Bless you both, prayers sent.
Best wishes to you and your daughter.
We can only hope to be as strong as she is ...
And congratulations on the engagement
She sounds like an incredible woman. Praying for you and her.
Praying for healing, blessings, peace, strength, and comfort for your precious daughter, in Jesus’ name.
Praying for your daughter and you and your entire family.
Your daughter sounds like a wonderful person that appreciates the little joys on life. Prayers for her health, a successful surgery, and recovery.
Prayers up you for the stress this puts on you as a parent and caregiver.
God bless you both.
If she is getting Harrington Rods to correct the scoliosis, my mom had that done, and it was 110% successful.
She will be in my prayers!
Your daughter sounds like she has her priorities straight.
Does she consider herself a victim soul?
God bless her! Prayers from her are probably more effective than prayers from me!
She sounds like a remarkable young lady. I truly wish for a wonderful life ahead of her. God's healing and peace!
Gees oh man...several sent.
also one to Him for giving the ones I love good health and luck.
Your daughter sounds like the type of person that I believe is the reason the Good Lord lets this earth continue! Praying for her.....
My youngest has ED.
Jaw and shoulders already worked on, now needs knee surgery. Has port in chest.
Dr.Bradley Tinkle at Peyton Manning Childrens hospital in Indianapolis is the #1 or 2 guy for this reportedly.
Dr Wo at IU ( motility expert ) is her other doctor.
Does not have vascular version
You got em. I sure know the burden of autoimmune diseases.
Prayed for her healing, and that God will receive glory in the process. She sounds like a wonderful young lady, and you seem to be a very loving father. God bless you both
Flagstaff: I am so sorry to hear of this terrible affliction affecting your daughter.
Wish there was more that I could do - prayers sent.
I hope this surgery helps.
Stay strong, your daughter needs you.
Hold into the wind
VarmintGuy
Prayers for her, you and all involved!
Prayers sent for her and you. Also for all the staff working on her today and Monday.
Prayers for her and the whole family.
Most people don't realize how good they have it.
Prayers for your daughter. Hopefully this will make things more manageable for her.
Yes, and Amen. She sounds like a person the world desperately needs. Godspeed to you all.
Prayers sent for this Tough Lady! You take care yourself!
Prayers sent, for your wonderful daughter and entire family.
Prayers and strength to you and yours. Amen.
Heartbreaking to hear stuff like this. Prayers sent from West Texas flagstaff.
Prayers for your daughter sir, she's a blessing to society.
I had a pretty rough day today but after reading that I realize I have not one single problem.
I have done some reading on that disease.
Does she have the gut paralysis as well?
Good luck to her!
Prayers sent. Your daughter sounds like a wonderful person.
Our niece had the back surgery that you speak of, she is 100% today, and that was about 20 years ago now, all good.
Prayers for a full recovery.
Prayers on the way from Michigan!!
Your daughter sounds like a wonderful person that appreciates the little joys on life. Prayers for her health, a successful surgery, and recovery.
Prayers up you for the stress this puts on you as a parent and caregiver.
God bless you both.
And ^^^^^this^^^^^ from a different Mark.
Prayers from here.
Praying Ps.91 over her this day. powdr
Flagstaff,
Prayers sent for your daughter.
The vast majority of us take being blessed with good health for granted, it's post like this that make me realize just how lucky I am.
Prayers for all of you.
Whatever problems I have in life are small compared to your daughter. She is truly an inspiration. Sounds like her mind is made up to overcome whatever comes her way. God bless her in her life and you in yours. Be encouraged. God's speed to her and all those that know and love her.
Done. Hope the surgery works out well for her.
Love in action.
Prayers for everyone involved.
She will be added to the prayer list at my Baptist Church.
You are both on my prayer list.
Now on the list. Way too many in need. But always room for more. Done Flagstaff.
This touches the heart.
Prayers for her and your family.
Never been a man of prayers but for this I will. God bless.
Osky
Prayers for your courageous daughter.
Prayers sent Northward for your lovely daughter. You sir, are one great Dad.
prayers sent from TN as well
You got it, my. Com friend. Tell her thanks for her serving her community.
Absolutely will pray for her.
From a dad of a daughter to another, Flagstaff, much prayers from Maine. Be strong.
Prayers sent; I surely hope for the best for her & your family.
MM
Prayers sent. You Sir are an outstanding Father.
Just think,in a few months you can walk this young lady down the isle.
Best of luck to your daughter ,hoping for the a quick recovery and healing.
Prayers and well wishes for you all.
You've got it, Flagstaff! She sounds like an absolutely incredible human being, sir.
Prayers for all . Life hands tough cards , to the very best at times. Just like your daughter. Have faith . I have a son with an auto immune problem and I thank God every day it’s inactive right now , but it will never be “gone”.
My allegeries seem to be acting up...I feel for you and your awesome daughter
Damn....I'm sorry to hear of this malady.. Our prayers are with her today...
We pray for her. Pray they can help her and she can have a good life. It sounds like she has made a difference in others lives. Pray the medical community can make a difference in hers.
You and she both have our prayers……may she continue to cope with her illness and be blessed with a good marriage! memtb
Flagstaff,
I listened to this yesterday evening and was encouraged. I think that you will be interested in listening to it all the way through and passing it on to your daughter. Jennifer Daniels is my PCP and has had answers others haven't and saved me thousands of dollars. Let me know if I can pass along her contact info or any further information.
Happy Camper
https://www.brighteon.com/8cc91795-29f7-4a93-906d-1e685c19cc99
Sounds like you raised a very strong, intelligent, caring and loving daughter. It's evident you are very proud of her and love her very much. I'm praying for the best, for both of you. Be strong and remember to take care of yourself also. She needs you.
She is certainly an overcomer. Thanks for sharing her story with us. Will be praying for her.
Praying for your daughter and for you. I can't imagine anything worse than watching one of your children going through something and as a parent a person can not do anything.
Prayers for a good out come and healing!
Oh dear GOD. And we think we have problems. Praying for her here, bro. Bad allergies.
Dear Farther in Heaven, please help this Angel with restoration of health, and may all of yours meet her some day in your Heavenly home. Thank YOU Father for prayers answered, for it is in JESUS'S name we pray. AMEN.
Big time prayers from us in N.C. Prayers for you all, as this is clearly a team project of great importance.
Praying here in NC my friend. I can't imagine. God bless you and your family. God bless your daughter please
Please keep us updated on her situation.
You have my prayers and my deepest respect! Your dedication to your daughter through the sacrifices you’ve made are truly inspiring. You Sir epitomize what all fathers should aspire to be. You exemplify what a parent’s unconditional love should look like.
May God bless you both and I pray for the best possible outcome for your daughter!
Prayers sent Northward for your lovely daughter. You sir, are one great Dad.
I can’t say it any better.
And now I’m off to count my blessings, one by one.
Her having food available for the homeless is akin to a man coming out of retirement to help out his daughter. She is quite simply her father's daughter. You must be very proud.
Prayers for a successful outcome. We need more folks like you two.
And your new son-in-law is damned lucky to marry her and into your family. Congrats!
Certainly Flagstaff - as you request and ongoing . Thanks for telling us about your daughter - in all of that she is a good. gracious and caring person. Wishing you both the best outcomes.
How did her surgery go yesterday FS?
Praying for a healing hand to touch this young lady.....
Prayers for your daughter and family.
Her surgery yesterday went well. Her surgeon said he was pleased with the outcome. She slept ok and isn’t hasn’t been in a great amount of pain except one episode.
I have been her the whole time. Slept there on the couch in her room. Actually slept pretty well considering but I was exhausted.
Thank you all for the prayers and well wishes. It means a lot and that there are still good people out in the world.
Thanks for the update. Glad to hear that the procedure went well. Continued prayers from N.C.
Still praying, Flagstaff. God loves you & your daughter more than you can know in this life.
Prayers sent for both of you and for her recovery! 🙏🙏
Prayers sent and you are a helluva dad!
Good to hear it went well.
Full recovery most definatley needs to happen.
Her and your whole family need and deserve a smoother path.
Flagstaff-
I prayed for your daughter and yourself for quick healing..... She sounds like an amazing angel. Keep strong friend.
Wonderful to hear!
Prayers for continued and full recovery from here.
Good news on the first surgery. Praying the one on Monday goes well too.
That’s great news! Hopefully all is well ! More prayers on the way!!!
Great news, Praise the Lord.
Great news on the successful surgery, Flagstaff. Thanks for sharing it. You all need rest and some time now. Prayers that it brings complete healing and a better life for her going forward.
She sounds like an amazingly strong young woman and you a hell of a dad.
May the good Lord guide the health care professionals and return her to a functional quality of life.
Bless you and your family.
Keep her spirits high, Dad. God love her!
Your Daughter sounds like a wonderful, caring, and thoughtful person. I will pray for her to have a complete healing and blessings for you and your family. Please keep us posted.
Jim
Good news, ongoing prayers it all goes well.
You're a good father.
Thanks for the update, prayers continued!
So the prayers must be working
We didn’t realize it yesterday, but the hospital room she’s in is a VIP hospital room. Lots of famous people have been here. Elizabeth Taylor, Quincy Jones, Tiger Woods and recently some boxer named McGregor.
I was wondering why the room was so fancy
Update:
My daughter had her second surgery today. 9 hours and two units of blood. Doctor said the procedure was successful and was pleased with the results. They fused 12 of her vertebrae together. The human body has 33 vertebrae and 9 fuse together naturally. Like in you pelvis area and tailbone. He said he took enough of the scoliosis curve outta her back that he believes she will now be 3” taller than what she was.
She is in a lot of pain and will be for a while. She will be in the hospital for another week. The doctors are thinking a 6-12 months to full recovery.
I wish I could take her pain.
Thanks for the prayers. She will be needing them.
Glad that she is thru the hard part.
Hope she continues to get over this hurdle in life.
I’m very glad to hear that the procedures are going well. Very sorry to hear that there is a lot pain. Continued prayers for her, from us in N.C.
Wow. She's a fighter! More prayers on the way for such a remarkable woman.
I am late to the party ... but my prayers of Thanksgiving go out to your daughter and to you for the love and support you have given her.
PS: She is in a WONDERFUL hospital! My cousin had a heart transplant there a year ago ... during the middle of the Chinese Coronavirus pandemic ... and like your daughter ... she too got a new lease on life.
It is so good to hear that the spine surgeries are going well and giving such promise, but we know that a bunch of trauma, pain and anxiety are wrapped into such complicated and prolonged procedures. I pray that God will lift you and your daughter above those effects and for swift healing and relief.
Your daughter sounds like a great woman. You're a great dad. May she have a swift and easy recovery from her surgery.
God Bless the little one. May God give her the comfort and healing she needs. In Jesus name. Amen
Update:
My daughter had her second surgery today. 9 hours and two units of blood. Doctor said the procedure was successful and was pleased with the results. They fused 12 of her vertebrae together. The human body has 33 vertebrae and 9 fuse together naturally. Like in you pelvis area and tailbone. He said he took enough of the scoliosis curve outta her back that he believes she will now be 3” taller than what she was.
She is in a lot of pain and will be for a while. She will be in the hospital for another week. The doctors are thinking a 6-12 months to full recovery.
I wish I could take her pain.
Thanks for the prayers. She will be needing them.
Awesome news FS I'm glad to hear she fared so well.
I remember the pain from having 3 fused together back in 2014 I can't imagine 12 she's one tough Cookie! The docs that say 6-12 months recovery have never had this type of surgery it'll be more like 3-4 years. Docs said 5-6 months for me and it was more like 3 years to get back to 100%.
I hope she keeps doing so well.
Good news for sure.. 3” in height, wow. She is one tough young lady.
Still praying.
Osky
Good news and continued prayer for her quick and complete recovery.
Good on you for being there for her.
Prayers for your daughter. And good on you for all you do.
You are a good father.
The best of wishes from southwest Iowa.
Prayers that her pain doesn't last - but her recovery does.
And comes quickly.
Just an update
My daughter is doing very well. Recuperating but doing very well. She is happy and very glad she had the surgery. I didn’t fully realize how bad her spine was. It was really, really bad. But much better now.
Thanks for all your prayers, guys. I really appreciate it.
Ted
Great news! May she continue to improve.
Just an update
My daughter is doing very well. Recuperating but doing very well. She is happy and very glad she had the surgery. I didn’t fully realize how bad her spine was. It was really, really bad. But much better now.
Thanks for all your prayers, guys. I really appreciate it.
Ted
Praise the Lord!
May she recover sooner than anyone expects and be pain free..
That was major surgery. Glad she's improving.
Something to be thankful for!!!
Uplifting for sure.
3" taller-she can give you all her oid pants,,,,,,
Joking aside,
Fantastic she on the mend and healing.
Good to hear. Hope she continues to improve.
Good news deserves a prayer, also.
One of thanks sent from here.