J's Last Dance
Like any other parent I will never forget "D-day" (diagnosis) for us. My precious 8-month-old had just spent 5 hours in an MRI scanner at Children's of Milwaukee searching for a possible tumor on her spine causing her progressive lack of movement. Instead there was not a tumor and I was told about a fatal disease called Spinal Muscular Atrophy, which was soon after confirmed by genetic blood testing. We were given a limited prognosis by the neurologist, but I refused to listen to that doctor tell me I was going to lose the best thing that ever happened to me. I immediately got on the internet and found other families like ours. My heart broke seeing all the photos of babies who lost their lives to this disease, but I also found many families whose children were living and HAPPY and I was put in touch with an amazing doctor near us in Madison. Dr. Schroth is a specialist in her disease and I can never thank her enough for all of these "extra" years we have had. Despite the fact that Jerika never crawled, walked, rode a bike or did many other things most children can she was a very happy girl. Creativity allowed for our own way of fun and we enjoyed many wonderful moments together and I couldn't begin to put words to the gift my girl has been to my life.
Unfortunately, SMA is a relentless disease that has left Jerika with very little movement and an incredible amount of pain that has become too much, and like any parent, I promised my child when it got to be too much I would be behind her no matter what. She has endured more in her 14 years of life than most adults will ever have to. I am beyond proud of her for fighting so hard for this long and I am honored to be her mother.
She has let me know now that she needs to be free of her broken body. She has a couple last wishes that I would love your help with. She wants a to have a "prom"..one night of music and dancing and fun. She wants a disco ball and black and lime green decor and to be surrounded by lots of friends she has been unable to see for a long time. She also wants to make it down to see her other SMA friends we see every year at Avery's Race the weekend of July 14th. After that she will come home and begin her journey to Heaven.
I will be forever humbled by your support through the years for us and I would be forever grateful for any help you could give me with the end of our journey together and many prayers of strength to make the coming days as pleasant and magical as possible!
I'm a designer & would like to make her prom dress free of charge, if she hasn't picked anything yet. Please let me know https://m.facebook.com/Kareecouture & my 9 year old son who owns the company Build-a-Bow would like to create her some custom hair bows. Https://m.facebook.com/Buildabow we plan on attending her party this Friday! God bless your beautiful family.
"...and like any parent, I promised my child when it got to be too much I would be behind her no matter what..." -- This takes an unbelievable amount of strength and selflessness and love to be willing to stand behind your daughter and be there for her and support her decision. My heart goes out to you as someone who lost her only daughter and had to make the decision to let her go so that she would not continue on in pain. Sending love and positive energy your way.
Some of you people are absolutely disgusting. Sham cures? Judgment of a situation of which you know absolutely nothing? Offers of worthless faith healing? Talking about "pain management", when this is a disease that doesn't just cause pain, but takes away every bit of control a person has over their own body? If you can't say anything positive, shut up. No one is asking for your opinion on what this young woman has decided in terms of her own life, so keep it to yourselves. I'd say you should all be ashamed of yourselves, but then again, I doubt that those of you who see fit to make these ridiculous comments possess enough sense to feel shame.
I just came across your story via Instagram. I am filled with so much emotion. I can't stop crying. I have (LGMD 2B) limb girdle muscular dystrophy dysferlin gene muscular. also very rare and incurable. Your story made me feel like I can keep going and how blessed I still am. My type sets in late 20s early 30s while i didn't know at the time I think my symptoms started about 23 or 24. There are days that I want to give up bc I don't want this stupid disease I hate that it took my life as I knew it away. Then I see you who manages to keep a smile on ur face through all the pain never getting to experience half the things that I have gotten to. Bless you sunshine you have touched me. Thank you
You and I both have Spinal Muscular Atrophy Type 2, and just like you I live every day with chronic pain that at its best is a 7 out of 10. However, even though the quality of my life leaves a lot to be desired, I view my life as too much of a gift to end it before God decides that for me. Even though I don't agree with the choice you have made, I do hope and pray that the last summer of your life is everything you hoped it would be and then some. God bless you child .
I am moved also from this story. I speaks in a way that only few understand. Please send me an address so that we can send cards to God's Angel. We will also pray for the family and the mother. We can be reached at Eastside Church of Christ 318 Manhattan Rd. Joliet, IL 60433.
@cityofappleton I read your story and my heart goes out to to you...you are a very beautiful person inside out. I am a strong believer in god and I strongly believe in miracles.upon reading your article immediately I stop reading and begon to pray with faith lifted up to God. Because I know God is able to do just exactly what he say ge will do..he alway fulfil and come through with every promises to us. I can understand your decision of wanting to go because of the constant and unbearable pain that you go through. But I pray that God will work a miracle and heal you of your ailments and whatever it is you are going through...dear Jesus you raised up the dead you cause the blind to see .there are so many things that you have done...here tonight dear God I'm placing Jerika in your hand. Shiw her Lord what you can do.heal her right now dear Jesus.. you say whatever we ask in your name you will grant it unto us..here I come on Jeruka behalf with stong faith lifted up dear Jesus I asking you God to heal her right now give grant her longer life release her of all her pains and discomfort..Lord you know everything about your child.I place her solely into your hand Jesus cover her under your blood.give her strenght to go on ..I place her mother and family and friends in your had help them to lift their faith in you and to present the situation at hand to you..because only you alone is able tofix the situation right now..dear Jesus uf there is anything that i have failed to mention or asked of thee fail not of granting it unto us..cover Jerika surrounding and protect her and ger family guve them strength dear God in this time dear father help them to look to you from whence cometh their help give the faith ..Lord I leave it all to you and right now I claim healing for Jerika your your sweet holy precious name amen.thank Jesus thank you thank you..Jerika my dear only God knows best..Just take everything to God in prayer and leave it there. He will fix it for you...keep staying strong my dear..God bless you and you family..lots of Love.Marie Mc
This made me burst into tears, but I'm so glad that you finally got a voice to speak for yourself and make your choice that's such a hard decision. But you live with this everyday, the hurt and pain and probably thinking that your just a big pain to your family having to take care of you always because you can't do it. I wish the best for you. And Jen, no mom ever deserves to lose their child and no child ever deserves to lose their mother. I lost my mom, and it did a lot of damage to my life today, but I know my mom is in a better place and is being stress free, she's happy and being taken care of. Always look at the bright side. Don't think negative because your daughter will be happily smiling in heaven. And she will be looking down on you always. & when she says she doesn't want you doing anything wrong to yourself she will be watching. I know I'm watched every day. & I almost took my own life not too long ago. But my mom made sure I stayed alive. I really wish you and your family the best and I'll pray for you all.
May God bless. I don't know or feel your pain but I can a sure you that this decision is not the answer to your pain. Please turn to God and I am not saying that at some point you haven't pray, What I'm saying is really turn to him. Put your faith and pain in him let him take full control. The word of God tell us that his is are healer when the man power is over and they can't do anything else for you. The power of God comes in, He can do things that man can't. But you have to act in faith. Your decision is not right in Gods eyes. He loves you and wants you to have eternal live but on his time. When he deicide is time for you to go with him, Not when you decide. Please don't let her make this mistake. May God bless you and guide you to his will.
Everyone who is donating should be ashamed. She should be raising money to see some of the best pain management specialists in the country. It takes years and sometimes even decades to find the right pain medicine. If she could walk she would be in a treatment center. Child services would remove her from the home. Yet since she's disabled, people are giving her money. She is neither courageous nor an inspiration.
I think it is disgusting the way the some of these people are shaming Jerika and her mother for making the most difficult decision they have probably ever have had to make in their lives. I think it is beautiful that they communicate so well. Only they know the suffering she is enduring and know what is best for her. As my mother always said, "If you can't say something nice, don't say anything at all"!! So those of you who think you know it all, "SHUT UP"! Let them live their lives in peace and enjoy their last summer together. I wish both you a summer filled with love, fun, and peace. God Bless You both! You are an inspiration to me!!