Please help baby Kynslee

$10,725 of $15,000 goal

Raised by 153 people in 30 months
Kathy Townsend Smith
on behalf of Mary Daiger Mullins
 FREDERICKSBURG, VA

11214583_1524679886.4119_funddescriptionThank you so much for thinking of our family. Kynslee's story is very, very long, but here is a condensed version.

Kynslee was a happy, healthy 14 month old in April of 2016. On April 22nd she woke up without the use of her entire body. Over time she also lost the ability to eat, she has trouble swallowing, she has many seizures per day, swallowing just her saliva is difficult, she often gets sick and is susceptible to pneumonia and aspiration, she doesn't have most of her vision, cannot talk and still doesn't have use of her body, unable to even hold her head up.

We have been to many, many hospitals starting with the ER at Spotsylvania Regional. We've also been to VCU, John Hopkins, Children's National, Children's of Philadelphia, Children's of Wisconsin and Kennedy Kreiger inpatient rehab facility.

We're almost 2 years into this journey and not one of these hospitals has been able to tell us what happened to our daughter, how or if it can be "fixed" or where to go from here. What we do know is she has had every genetic test done that is available and they are all normal. Her brain has shrunk and she has white matter all over her brain, but no one knows why.

Kynslee faces many struggles each day. She's currently on the ketogenic diet for seizures in addition to 2 seizure medications. At first the diet did wonders for the seizures, but now she continues to have many seizures a day. She's also on 2 reflux medications, but still spits up multiple times daily. In the future, she may need a procedure called nissen to prevent the spitting up as it can cause aspiration which is extremely dangerous for Kynslee. She recently had a sleep study done which revealed nothing except that her eeg is "not normal" (duh). She also had double hip surgery in March where they cut the tops of her femurs, put them back in socket and placed a screw and plate to hold them in place. She's been in a wedge for 6 weeks and getting her used to being without it is proving to be another struggle. In one year she'll need another surgery to remove the plate and screw. In total, Kynslee is on 8 medications multiple times a day and several vitamins and supplements.

This life changing event has completely changed the lives of our entire family. While our 9 year old is an amazing brother filled with patience and love, it is still extremely hard for him. Dan and I are both working, but I have to take so much time off for appointments, hospital stays, etc. that I don't make very much and it's always a struggle to make ends meet.

Right now we live day to day. We cherish the good days and even the smallest of milestones. Without knowing what the future holds we try our best to get through the bad days with grace and always advocate for the best care for our sweet angel.

Your support means everything to us and we are forever grateful for your love and prayers.
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Thank you so much for thinking of our family. Kynslee's story is very, very long, but here is a condensed version.

Kynslee was a happy, healthy 14 month old in April of 2016. On April 22nd she woke up without the use of her entire body. Over time she also lost the ability to eat, she has trouble swallowing, she has many seizures per day, swallowing just her saliva is difficult, she often gets sick and is susceptible to pneumonia and aspiration, she doesn't have most of her vision, cannot talk and still doesn't have use of her body, unable to even hold her head up.

We have been to many, many hospitals starting with the ER at Spotsylvania Regional. We've also been to VCU, John Hopkins, Children's National, Children's of Philadelphia, Children's of Wisconsin and Kennedy Kreiger inpatient rehab facility.

We're almost 2 years into this journey and not one of these hospitals has been able to tell us what happened to our daughter, how or if it can be "fixed" or where to go from here. What we do know is she has had every genetic test done that is available and they are all normal. Her brain has shrunk and she has white matter all over her brain, but no one knows why.

Most recently she has had blood work done to test for heavy metal toxicity. This could indicate a vaccine injury or possibly something she and another child got into at daycare. We are still waiting for those results.

Right now Kynslee has a sleep study coming up and surgery on both hips. Her hips are coming out of socket so they will cut the bones in both hips, put them back in the sockets and hold them with a screw and plate. She will have the surgery on a Tuesday in March and will hopefully be released by Friday or Saturday.

Kynslee faces many struggles each day. She's currently on the ketogenic diet for seizures in addition to 2 seizure medications. At first the diet did wonders for the seizures, but now she continues to have many seizures a day. She's also on 2 reflux medications, but still spits up multiple times daily. In the future, she may need a procedure called nissen to prevent the spitting up as it can cause aspiration which is extremely dangerous for Kynslee. In total, Kynslee is on 8 medications multiple times a day and several vitamins and supplements.

This life changing event has completely changed the lives of our entire family. While our 9 year old is an amazing brother filled with patience and love, it is still extremely hard for him. Dan and I are both working, but I have to take so much time off for appointments, hospital stays, etc. that I don't make very much and it's always a struggle to make ends meet.
Sporting her Nana made head support.
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We want to THANK everyone for their support! Every single dollar is so greatly appreciated! Our love to all!! ❤️❤️❤️❤️
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Dear Family and Friends,

I am asking for your prayers, love and support again for our precious granddaughter,Kynslee Lydia Rayne Mullins. It’s hard to believe it’s been 16 very long months since our sweet baby girl got so sick virtually overnight. 15 days at Children’s Hospital in Richmond, VA, 3 months at Johns Hopkins in Baltimore, MD, 4 trips to Children’s Hospital in Philadelphia, PA, MANY trips to Children’s National Medical Center in Rockville, MD and Washington, DC and soooo many appointments with other medical professionals and even a Holistic Doctor and STILL NO DIAGNOSIS or TREATMENT for this beautiful baby girl!! This strong little girl has endured multiple MRIs, Spinal Taps, EEGs, sooo much blood work and so many different medicines! Kynslee and her mommy, daddy and big brother have been through much more than ANY family should EVER have to endure!
I am asking for your help to send Kynslee and her mommy to The Children’s Hospital in Wisconsin next month. This hospital specializes in undiagnosed cases in children! They have reviewed Kynslee’s medical records and have seen videos of her and THEY HAVE ACCEPTED HER into their program!! How wonderful!!! We are PRAYING so hard that they will finally be able to give us some answers but MORE IMPORTANTLY heal this beautiful baby!
Although she has medical insurance, (Mary literally works so that Kynslee will have insurance to be seen by doctors outside of Virginia) this VERY IMPORTANT trip will be an additional overwhelming strain on their finances. The airfare, the time missed from work, etc.
We are THANKING YOU from the bottom of OUR HEARTS for any help you can provide!! Thank you all again for your previous love and support! May God Bless Each of You! Much love to all, Kathy and Family
Please help our precious girl!
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Hello everyone! The Fundraiser was a HUGE success! We simply can't say THANK YOU enough to each and every one! Our precious granddaughter Kynslee received so much love!! If you can find it in your heart, please continue to help this loving, hardworking, young family. Kynslee is working hard at therapy that she goes to almost every day! Mary and Dan are working hard too! Thank you so much! May God bless each and every one!! We love you all!!
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Read a Previous Update
Daniel Mullins
30 months ago
2
2

Me and Mary can't express how much you all mean to us. Your charity will not be forgotten. It is truly amazing what God can do! Please continue to pray for Kynslee(Peaches) and the family!

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Beth Sisson
30 months ago
1
1

God I ask you to place your loving healing hands upon baby kynslee and heal her as only you have the power to do so I ask in Jesus name amen

+ Read More
Kathy Townsend Smith
30 months ago
1
1

Thank you all so very much!!!

+ Read More
Ellen Soehngen
26 months ago

If you have not already you might want to join Momatopia which is a Facebook group for SN moms. They can help you negotiate this special world!

+ Read More
Daniel Mullins
30 months ago

Sweet face is being transferred to in patient rehabilitation today. We have to wait 3 weeks for genetic test results to hopefully provide a diagnosis. No clear answers and a very uncertain future at this time.

+ Read More
Daniel Mullins
30 months ago

We are currently at John Hopkins. They admitted us last night for lack of nutrition and dehydration. We have a co-workers daughter that has been great. She got the top neurological team on this before we arrived. We met Dr. Oakley today and he seems to think if the "ADEM" treatment didn't work yet than it may be metabolic in nature(her genomes). More blood work drawn. MRI being scheduled and another lumbar puncture. We believe we are here for a reason. Please continue to SHARE. All the help thus far has been a miracle in its self. The next miracle will come in gods time.

+ Read More

$10,725 of $15,000 goal

Raised by 153 people in 30 months
Created May 6, 2016
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WB
$200
Wendell Bishop
7 months ago

You and your family are in our prayers. Keep the faith!

EK
$100
Eric Koch
10 months ago

Merry Christmas Kynslee and Family. Thoughts and prayers to all of you this special time of year!

MC
$100
Michael Cribb
13 months ago

i wish I could do more. She is so precious.

DM
$50
Debbie Messick
14 months ago

Continuing to Pray for Sweet Kynslee

WW
$100
Wendy Wainscott
14 months ago
1
1

Love you all!!

PM
$50
Pat Martin
14 months ago
1
1

Many positive and warm thoughts are sent your way every day little Kynslee.

Daniel Mullins
30 months ago
2
2

Me and Mary can't express how much you all mean to us. Your charity will not be forgotten. It is truly amazing what God can do! Please continue to pray for Kynslee(Peaches) and the family!

+ Read More
Beth Sisson
30 months ago
1
1

God I ask you to place your loving healing hands upon baby kynslee and heal her as only you have the power to do so I ask in Jesus name amen

+ Read More
Kathy Townsend Smith
30 months ago
1
1

Thank you all so very much!!!

+ Read More
Ellen Soehngen
26 months ago

If you have not already you might want to join Momatopia which is a Facebook group for SN moms. They can help you negotiate this special world!

+ Read More
Daniel Mullins
30 months ago

Sweet face is being transferred to in patient rehabilitation today. We have to wait 3 weeks for genetic test results to hopefully provide a diagnosis. No clear answers and a very uncertain future at this time.

+ Read More
Daniel Mullins
30 months ago

We are currently at John Hopkins. They admitted us last night for lack of nutrition and dehydration. We have a co-workers daughter that has been great. She got the top neurological team on this before we arrived. We met Dr. Oakley today and he seems to think if the "ADEM" treatment didn't work yet than it may be metabolic in nature(her genomes). More blood work drawn. MRI being scheduled and another lumbar puncture. We believe we are here for a reason. Please continue to SHARE. All the help thus far has been a miracle in its self. The next miracle will come in gods time.

+ Read More
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