Help Us Give Dollygrace the Best: Donate Today

See update!!! What started as a go fund me to help with her needs has now taken a turn for a mother’s worst nightmare. 

This is my beautiful 3 year old little girl Dollygrace. She is my 1 in a million. Literally. She is rare. She is beautiful. She is perfect. But she’s also medically complex & because of her special needs she shouldn’t be but we’re

struggling for her needs to be met. She has a rare genetic condition affecting less than 100 people worldwide!!!

She was diagnosed with Spata5 & autism.

SPATA5 is a neurodevelopmental disorder diagnosed in approximately 100 children world-wide with the following symptoms present in cases: SYMPTOMS Epilepsy, Hearing Loss, Developmental Delay, Dystonia, Spasticity, Hypotonia, Microcephaly, feeding difficulties, Cortical Visual Impairment, Abnormal MRI, Neurostorming, Behavioral Issues, Sleep Disorders, intellectual disability, and much more. She is rare. She is beautiful. She is special, loved, and deserving of all her needs to be met so she can live the life she didn’t ask for but deserves.

As a single (disabled) mom of 3 I’ve been trying to travel this road alone & trying my best to accommodate her & all of her day to day needs. As she’s growing & her needs became more difficult, financially It’s become impossible for me & it’s unfair to her. She didn’t ask for this. So even though I feel less than because I have to ask for help, I’m doing it because she needs it. She deserves it. Just trying to afford her feeding necessities that insurance doesn’t cover is not possible with my income. We’re going to be getting a feeding tube soon, but we can’t give up getting her to eat by mouth more & continue with what she does already all because of money. That’s just the beginning of some of the day to day stress I try to navigate, along with never ending phone calls trying to advocate for her and get her proper help, all of her appointments with her specialists, therapies, the multiple surgeries she’s undergone, 2 other children and her need for my care 24/7. I’m exhausted & mentally it’s taking a toll of my own health, I have multiple sclerosis . When the doctors and I starting hit brick walls getting her needs covered & it taking a toll of my health, I knew it was time to ask for any help as I fight the system to help her more. So thank you for reading this far, shares or donates. You truly are changing a innocent 3 year olds life and helping eliminate some of the daily stress in my life as her mother as well. prayers are always appreciated as well.

Thank you.

Truly.

Edit to add. Cashapp is NicholeSnyder88

as some have asked. Thank you again.

Tik tok is https://www.tiktok.com/@nicholesnyder88?_t=ZP-8w471NPcPZ1&_r=1

you can follow more there as well.

Your donation will help cover home and daily accommodations for her, which are very challenging because she’s growing and they’re changing and very necessary as she is. (Insurance won’t cover).

Her feeding supplies most importantly! She needs them to survive and this is my biggest financial struggle (Insurance won’t cover). They will however cover the feeding tube & those supplies once necessary (surgical appointment Monday to schedule).

Daily needs.

Travel costs to help get her to and from numerous weekly appointments( each over an hour away, each way).

I can only add a few photos. Please feel free to go to my Facebook and tik tok to learn more about SPATA5 & her

She can’t walk, talk, hear, eat, understand like us etc HOWEVER she can love & smile like no other. So if she could say thank you she would. But I’ll show her the love from you all & tell you much love from us for her & thank you again.

YOU ARE HELPING MY BEAUTIFUL LITTLE GIRL SURVIVE THIS FIGHT.

HEROS DONT WEAR CAPES.

Posting updates below so it’s easier to find her story 

UPDATE- June 4th Dollygrace had her gtube surgery. They said to give her pedialyte thru her ng tube prior to surgery since she was unable to have formula after midnight, just to hold her over. So all was well. We get in the room at the hospital around 6am. Getting her all ready. She’s dressed in her gown and she starts vomiting. Everywhere!! Right before surgery was set to start. Cleaned her up. Alarmed bc she’s not one to throw up like that & she’s non verbal so we didn’t know right away why. They give her the silly juice and Tylenol after a few minutes bc she didn’t vomit anymore and it was clear like pedialyte when she did. Long story short she threw all that up then too. So we were now in a EVEN more very high risk surgery. I wasn’t going to go through with it bc her risk was already extremely high. Anesthesia came back in, we all opted to move forward with a new plan to put her under immediately in seconds instead of a few minute gap the typical way theyd do the anesthesia and had planned, that way she didn’t have as much time or a high possibility to aspirate. So needless to say I was a mess. She however was fine and did not throw up during or after surgery. She’s that sensitive, so no pedialyte! Goodness. Anyway surgery was a success. She did great in recovery, on room air. The pain was extreme but we tried our best and still are to keep her as comfortable as possible. She isn’t liking it, the pain, the g tube in there, the button, she does however like to yank thr extension when it’s connected. So long story short we get the g tube pump and they never brought supplies along. So the hospital gave me some and pushed us out the door. I get home to feed her and have no bags for the pump, and one syringe to fit the extension and in pure panic. Called her care team. They sent me a link to order my own, however that will take a week Atleast. So I’m praying for a miracle bc bolus feeds are every 2 hours. 3 syringes full. 2 flushes. That’s connecting and disconnecting 10 times per feed every 2 hours and thats not including connecting putting the extension in the button and removing it after as well. And I have all her meds on top of that. So NOONE has heard from me bc my head is about to pop off. The bags and syringes for her pump for a 2 week supply are a few hundred dollars. Her dr said I should have backup anyway but they don’t realize how hard it is to keep buying everything and making every accommodation for her. So we have a new normal now and it’s not normal to either of us yet! However with time, everyone’s donations & any words of advice we shall get there and hopefully this becomes easier because it feels impossible. We have a video visit for a new feeding plan this morning at 9 am bc she can’t stay on infant formula any longer. We had to bc she refused to take anything else by mouth and when she did it was over 20 formulas and she’d throw them up. So I shall update as we get through this. But any donation is huge to us. Everything keeps changing and it’s all so expensive for med supplies and insurance truly covers the bare minimum, it makes me sick! She didn’t ask for this. Nor did any other child! Yet needs can’t even be covered. We also need a few of the adaptive clothing I did purchase some stuff prior to surgery to help keep it hidden but I was given a link to target who sells actual gtube adaptive clothing which will make life so much easier bc neither of us are getting sleep and undressing her every 2 hours to feed is just ridiculous so please donate. Share and pray. she is a fighter. She’s tired though. You can tell she’s just like I’m over this mama! UPDATE 5/31 We got the NG tube placed until GTube surgery & she hasn’t ripped it but !!!!! Dollygraces lungs both are mildly collapsed in the center. She still has pneumonia. And seizures. The feeding tube (G tube) surgery was put on hold for a few days until the anesthesiologist and her care team spoke due to her being such a high risk for the surgery however we are proceeding. It’s June 4th. I’m so scared. I cannot thank everyone enough for supporting her and the prayers. We need them now more than ever. I’ve been doing round the clock, every 2 hour 6 ounces bolus feeds (syringe through NG tube), I feel like I’m going to collapse. This is a very stressful time and I just want to truly thank every single one of you again. I’ve rearranged my house and still am working on it making the living room an area for her and I to be together all the time bc our bedrooms are each too small to fit her special play pen/safe area & bed into with mine. So everything is changing rapidly. And this is just really the beginning of so much to come yet. So please continue the prayers and anyone that can donate, we need your help. The help we’ve gotten so far is the only way I’ve been able to purchase all her supplies and make the accommodations thus far. Again thank you. Will update Wednesday after her surgery. UPDATE 5/23 Dollygrace became unwell again, we were sent for a NG tube due to aspirating during feedings. She is now nothing by mouth and tube fed through that until G tube surgery June 4th. Also detected seizure activity. She is still fighting aspirating pneumonia and now her lungs mildly collapsed so she needs time for them to heal, so it’s round the clock every 2 hour 6 ounce syringe pushed feeds of formula through NG tube and a lot of healing/ watching/ waiting & PRAYING. Just wanted to hop on here and update everyone while I had a moment. Your support means more than you know as I navigate this alone as a single mom and it’s all new to me, so again thank you for prayers ANY & ALL donations. She needs ALOT of accommodations and supplies. Not to J UPDATE- Dollygrace was rushed to the er and has been hospitalized due to aspiration pneumonia.