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Page 3 in the conversation "Update (2)My little warrior Go Fund Me & update" by Ledonna N.
Oh my goodness, Ladonna, we are all thinking of you and your baby girl. Much love.
I just saw this and know you must be so scared. Take care of yourself. You and Zi’Joy are in my prayers.
I just watched the FB video....my heart breaks for you and your daughter. So much to process...you have every right to be upset. I will spread the word about AFM and will continue to lift you and Zi'Joy up in prayer. Please let us know when the Go Fund Me account is up.
This is so stressful, please make sure you are getting some nourishment and sleep as well. Sending you lots of hugs and prayers!
Oh Ladonna, I just read through this thread with tears in my eyes. I am so, so sorry for how much you have had to endure and how much uncertainty there is to come. I hope knowing that we are lifting you up in prayer brings you a degree of comfort. You are never alone. Sending you love and prayers for strength.
Oh Ledonna, I'm so sorry Zi'joy has AFM. This is so heartbreaking. Sending love and hoping that she'll recover strength in her muscles soon and fight off this virus. Please let us know if there's anything we can do to help!
I’m so exhausted but I’m eating and resting. They gave us a couple sleeping bed. I had to sign a waiver but she was so miserable. I’ve held her every night from the time she was born. She was miserable in that cage bed.
Thank you all for reading. I believe one day she will be a living walking talking testimony
On another note if life keeps rolling along my Niece and my sister are in the hospital having my sisters grandson So I am going to become a great auntie and my sister a grandmother
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I do too. I believe. I’m glad she’s out of the cage bed and can sleep next to you. (I should think that’s better for her immune system!)
Is your niece in the same hospital? Are you a grand aunt yet?!
Sending you both lots of love... so sorry xx
oh, i'm so sorry. sending you and your daughter all the love and positive vibes i can...and congratulations on becoming a great auntie. one more person for you to spread your love and to love you and your daughter.
Donna sending so much love. You are such a GREAT mom and Zi'Joy is lucky to have you. I am glad you are able to nestle in with her; I don't want to sidebar with my strong feelings on this but suffice to say, if you can bring your child comfort just by being beside her, how can that be wrong ... ?? Looking anxiously for updates and GoFundMe as you're able and thinking of you xx
LeDonna, I am so sorry. I am sending you and Zi'Joy lots of positive thoughts.
Oh LeDonna, you sure are being dealt a very rough deal. You are both warriors through and through and you will get through this, and please know we will always be here to support you. I'm so glad you could nestle together again!! Your lovely pictures are bringing tears to my eyes. Warm hugs and please keep us posted.
Wow how incredibly awful, I don’t have many words. You are both in my prayers,
Yay for a snuggle bed!!
Praying for a smooth delivery for your niece.
I just heard this encouragement on my radio station:
If God puts a Goliath in front of you, He must believe there is a David in you.
LeDonna, I am so sorry about this diagnosis. I'm sending you all the best wishes for answers and successful treatment.
It may be a stretch, but I've asked two of my medical professional BFFs (one works in pharmaceutical research and development, the other a surgeon) if they have heard of any research or treatments. I have friends at NIH as well, and will ask them too.
In the meantime, yes, please set up a Go Fund Me so that you can get the support you need as you spend the necessary time being there for your sweet girl. I will contribute, no question.
Dear LeDonna and ZiJoy....praying for healing and strength for both of you....praying for knowledge and hope for the medical community to help you deal with this. You are a great mother, and you and ZiJoy will overcome this diagnosis. Hugs to you both.....
NIH has invested in studies of AFM, primarily based in University of Alabama at Birmingham, and I think there is some involvement with Johns Hopkins in Baltimore. Check out this link and send emails to the doctors listed, ask them who to talk to. Keep building on that network, and connect with other parents with children diagnosed with AFM.
Also, it does seem that a number of children diagnosed have been treated successfully with residual weakness:https://jamanetwork.com/journa.....ct/2735515
It appears there is a Facebook group for parents of children with this diagnosis:https://www.facebook.com/groups/601223099978283/
Oh, sweet Donna, I wish I could hug you in person.
Ledonna, I'm so sorry to hear about the diagnosis, but I have every hope that she'll fight off the virus and recover. Your daughter is a fighter after all. And she is SO LUCKY to have you as a mom; I know that you will be a tireless and amazing advocate, not just for her but for all the children that have this.
Much love to you both. <3
Oh Ledonna, I'm so sorry. I hope they start to have a clearer picture of prognosis as they start treatment and physical therapy. I was living in Colorado when the outbreak of this started there in 2014, and it was so scary. No one knew what was happening. I wish I was close enough to just come sit with you. I'd be there in a flash.
Donna, my heart breaks for you. Thank you for sharing and please continue as you can.
Just a reminder that you and ZJ are in my heart, and I am so glad you are able to co-sleep with her. I am sure that is helping her enormously. And congratulations on your great-nephew! (Little known fact: I am great-aunt to 17!)
Sending you love and continued prayers, Ledonna. You and Nugget are in my heart. Congratulations on your great nephew!
LeDonna, I follow your journey on Facebook as well and I am just shattered by this news. I also have a 2 year old daughter and your pain radiates through my bones and I just cannot imagine the immense pain you and your baby going through. I just feel so hopeless and wish there was something I could do. I’m sending lots of virtual hugs to you and Z’Joy. I am in Chicagoland and would love to send your baby a new toy or something to brighten her spirits.
Sending more love and hugs and prayers. Please let us know when the Go Fund Me is up.
How awful and terrifying! We got your back! Also check with your employer about taking FMLA to have the time off you need!
Oh, LeDonna, what a shock and how awful! I’m so glad they are letting you share a bed with your Warrior Princess. I hope you have family and/or friends there to support you. Sending thoughts for an extremely positive outcome.
I did not want to anger or step on anyone’s toes. So what I did iMessage Angie because I know the group is very wonderful and I’ve been with you all for years but I did not want to make any solicitation like a go fund me as in It might go against group rules: I love and respect this group so much. So I did message Angie. I’m waiting for a response and if, which I think is OK and if it is not approved then I can share my go fund me page privately maybe
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Ledonna, I admire your integrity so much. Period.
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