As most of you know, Tionna is 12 years old and suffers from an illness called (NF1) short for Neurofibromatosis 1...She has struggle all her life with this illness, as it try's to pull her down...Tionna NEVER gives up nor dose she ever blame God for being born with NF1... -------- Tionna has thousands of tumors though out her body...in side and out side all so deep with in her brain..Tionna, is just like any other child that loves to dance, run, jump, swim and ride bikes.. -------- But for Tionna, that's not at all what her life is like..she's not aloud to run, jump, dance nor ride bikes.. Nor is she aloud to do a full day at school..But does all this get her down? NO! not at all...She has always been a Trooper... ------- Our last visit to the doctors was really hard on both of us....her Doctor found 4 more tumors that have formed on the outside of her body..these are on her Stomach..We have also been going to a bone Specialist at Vanderbilt Hospital, Its one of the top hospitals in the nation. ------- The Doctors there have found a big hole in Tionna's left shin...the size of a 50 cent peace its been so very painful for her...all the Doctors can say is, That its another part of NF1.Tionna's Doctors started out putting her in a cast in the hope..That her bone would heal on its own.That went on for months..In 5 1/2 months her bone has done nothing. Still so very painful.Tionna has been taking 7.5 mg of Loratab every 4 hours for pain. When that doesn't work then she has to take Morphine to cut her pain. ------- The Doctors have now found a (BIG TUMOR) in side the hole. Tionna, is now in a wheelchair. She is wearing a Leg Brace to give her bone support, to keep it from breaking in to. She has about an 1/2 a inch of good bone holding the leg together. ----- Not knowing how or when this could have happened and believe it or not that's something that happens all the the time with NF Paishents...Tionna's right arm has been broken 9 times already..just because the NF1 has caused her bones to become very weak. ----- At this time, the Doctors are trying to find a way to Permanently Brace the Leg. But before that can happen..We have to know if the Tumor is Cancer's. So we are having CT Scans and Bone Biopsies,This to is all so painful. ------ Dear Father Above, How do I look at my baby when her hole word is crashing around her and say...(Mommy DON'T KNOW What To Do To Fix It Baby)...All we can do is Pray and Pray even more that God will heal her leg...not a lowing it to be Cancer. ------ As a Mother with a Child, that suffers with this illness...Its like sitting on a Time Bomb never knowing just were or when its going to go off...I don't think that I have ever felt (so helpless) in all my life as I do now...It Kills me every day just to see my child hurt and suffer as she does... ----- I know, God has something in store for her...I don't know what, but it will come...Tionna, is all the time saying,(That She Has This Illness So That She Can Help Other Boys And Girls In Dealing With An Illness That They Just Don't Understand).. ------ Her life dream, is to travel all over the world telling God's story...This Is one little girl that I do believe with all my heart that will have her dream to come true... ----- PLEASE!! Keep my baby in your prayers....She and I need all your prayers...And when you pray for Tionna, PLEASE! Ask God, above to bring a Cure an Treatment for ALL the ones that are fighting this battle..Thank You All For All Your Love And SupportGod Bless All Of You!A Mother's love is something that no on can explain, It is made of deep devotion and of sacrifice and pain, It is endless and unselfish and enduring come what may For nothing can destroy it or take that love away . . . It is patient and forgiving when all others are forsaking, And it never fails or falters even though the heart is breaking . . . It believes beyond believing when the world around condemns, And it glows with all the beauty of the rarest, brightest gems . . . It is far beyond defining, it defies all explanation, And it still remains a secret like the mysteries of creation . . . A many splendoured miracle man cannot understand And another wondrous evidence of God's tender guiding hand.Neurofibromatosis Public Service Announcement
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Heroes:
I will trust in You, O Lord When trials come, I'll trust Your Word. I will not doubt nor question You, Because I know Your Word is true. No matter how difficult things may be, I will press on and trust in Thee. I will rejoice and give You praise My voice to You, I will raise.I will trust in You, O King, With my whole heart, my everything. The times when I begin to doubt, I'll lift my eyes to You and shout... "It's You my God, who carries me through, No matter what I'll trust in You! No matter what my eyes may see, I'll walk by faith and trust in Thee!" I will trust in You, O God. In Your footsteps I will trod. Doesn't matter where they lead, I will follow faithfully. Through the valleys, over the hills, In darkened times, I'll trust You still. Through all the trials, whatever they may be, In everything... I will trust in Thee!My Lord Jesus, My Kids,& Any child who has or is fighting a life threatening illness. And all the men and women who risk their lives for our country and saving others.
