Neurofibromatosis & Cancer Took Her Down, the Lord Took Her Up

Living & thriving with Neurofibromatosis can bring on many challenges. Whether it is disabling, disfiguring, or just shows minor cosmetic blemishes, one should always have the knowledge of this disorder, and most need to seek support and reach out to those that are walking in our shoes. NF affects everyone differently. We did not ask for this disorder, but we must deal with it the best we can. To share this knowledge with others that are not aware of this is getting one step closer to acceptance to the ones that are handicapped or disfigured from this disorder. When my daughter sat in her wheel chair and noticed someone starring at her, she would give them a big smile and say Hi Im Melissa, and I have tumors, how are you? She would immediately put them at ease and hold a comfortable conversation with them. What a lesson many people learned when they walked away from her with a smile of satisfaction!
Though some of us may live so far apart, People with NF (neurofibromatosis) hold a special bond. NF does not discriminate who it touches. My father, Myself, my brother and 2 daughters all have it . My Father had his arm amputated because one tumor became cancerous. He later passed away from a cancerous brain tumor. My brother has hydrocephalus and has a brain shunt and suffers from seizures and migraines. My older daughter has no signs except for the cafe -au-lait spots. My youngest child, Melissa, passed away at the age of 7 when one of her tumors turned cancerous (Rabdoid on her left arm). A rabdoid tumor is one of the fastest growing tumors known, and the survival rate is almost zero. She was a very happy little girl that loved laughing and singing. Though her life was cut short, it was complete when the Lord called her home. She is much remembered for her Jesus songs & her laughter. Though she was never able to walk because of spinal tumors, she never wanted anyone to feel sorry for her. She always wanted to cheer other people up. And she certainly did! Her smile would light up a football field! Through many hardships, we are still counting our blessings and thank God for what we have. If the Lord asked me if I would want to do it all over again, I would. The 7 years was filled with more blessings than anyone could count!! It's like looking down upon your poor shoeless feet until you see a man without his feet. The roads we walk may be rough, but one must find the time to look down and find the diamonds in the dust. Many blessings to you and your family. May the Lord keep you safe..Susan

Category:

Education

Tags:

• cancer
• neurofibromatosis
• rabdoid
• tumor
• handicap
• disability
• melissa
• burke
• wheelchair

[goldboyjr]

I don't have NF, but...wow umm, bless you and ur family.

[dipinprint]

im 20 and have 3 neurofibrmas on my spine and it is true nfhurts like hell. I have type 1.

[musicbudss]

God Bless Her.

I'm 14, and I have A HUGE Nerofribroma on my leg.

I have type 1, And I Agree. living with NF, is horrble.

[LadyShyye]

so sweet, Memories last FOREVER! GOD BLESS. :-D

[melissaconnie]

Your saviour was truly giving- in giving your daughter this terrible disease!

What a very very nice thing for him to do!!!

[tottenhamhtospurs199]

@Hazekinse88 i have NF1 as well but so does all my family

[SlumberCloud]

i have nf......thanks for your story

[Hazekinse88]

@tottenhamhtospurs199 just ignore them, keep a chin up and be proud of who u are, i have nf1 and i will never let anyone walk all over me.

[Misskb1]

Thank you for sharing your story I am also affected with NF and it can be hard at times,may the grace of God be with you and your family ....... she is beautiful,Great vid

[icarrymycross]

I have nf and a 3yr ago I started having pain . It was 24/7 and so bad I wanted to die . God healed me and I have been pain free for 3 yrs . I can't stop praiseing HIM > I pray for others for their healing . May each of you be touched by HIS mercy, blessings and healing power.