Benefit for Shauna Jones-Demkowitch

$11,030 of $25k goal

Raised by 128 people in 38 months
Sarah Marie Jones  NEW HARTFORD, NY

Shauna Jones - Demkowitch (wife of Anthony Demkowitch) is expecting her third child and is in her fifth month of pregnancy. Her baby was recently diagnosed with Spina Bifida Myelomeningocele, causing an unfused portion of the spinal column to allow the spinal cord to protrude through an opening in the lower back. Following extensive testing at The Children's Hospital of Philadelphia (CHOP), it was determined that Shauna and baby Demkowitch were eligible to undergo prenatal Spina Bifida surgery. The new... landmark fetal surgery is performed in order to greatly reduce the need to divert fluid from the brain, improve mobility, and increase the chances for independently walking.

Following the surgery, performed between 22 to 23 weeks gestation, Shauna will be required to be on strict bed rest, within 20 miles of CHOP, until the date of her delivery in Philadelphia. A family member is required to be with her at all times, to monitor and provide care. This benefit will be conducted to assist in providing the family funding to offset the costs of the surgery and to facilitate the best potential for quality of life for the Demkowitch baby.
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Update 4
Posted by Sarah Jones
37 months ago

Today was our first ultrasound and doctors appointment since hospital discharge-9 days ago. I couldn't wait to get out of bed, have a change of scenery, and get some fresh air! Most importantly, we couldn't wait to see how my healing and recovery were going and the results of surgery,so far, for this little warrior inside of me!

After all the fear and anxiety over fetal surgery, I can finally realize the relief and pure comfort of knowing we made the right decision for our family. All of the sacrifices,for myself,but also for my entire family. Todays appointment was AMAZING!! Tony had a smile from ear to ear and tears of joy filled my eyes as I heard the incredible and miraculous news. It is so difficult with having a surgery such as this and also having a diagnosis of spina bifida. There is such a wide range of "unknowns" and so much is unpredictable. Any good or positive news is a celebration! Each appointment can vary from visit to visit. The goal is to get me and baby to 37 weeks without complication. For today, I will live for today and be thankful for this moment....

Baby Boy is developing wonderfully and is right where he should be for 24 weeks and a few days gestation. At this point, full movement of legs and feet. No signs of clubbed feet. The ventricles in his brain have not increased. They are still measuring the same size that they were since our initial consultation appointment and MRI at CHOP just over 1 month ago-which were 10/11. The best news was that they could see his cerebellum has started to become more "rounded". Which is great and promising news 12 days post op. He is a very active boy and they had a hard time even capturing an image for me to take home because he wouldn't "stay still". My little champ already!!

As for me, my amniotic fluid is at great volume and my membranes and hysterotomy site (incision on uterus) look excellent. All is healing beautifully at this point. I will continue to pray for these results at each weekly visit!

I am required to stay in hotel room on strict bed rest for the next few weeks. It has been difficult for me, but with news like today, it has ALL been worth it! My parents left for NY today after selflessly nursing and waiting on me for these past 9 days. I will enjoy my husband and children this week who pleasantly surprised me for valentines day. And my siblings that will come and visit with my niece and nephews, so I can lounge and take in all of their craziness and enjoy the laughter around me. My in laws are in NY still, helping with all of our "home" duties when Tony can't be there. Just like the crisp,fresh air that I inhaled this morning, It's the simple things.
I find myself giving thanks to God for all the things that cost nothing and are worth everything. Each day I am realizing this more and more....

Thank you to ALL my loving family and friends. My incredible community and the generosity of complete strangers. My "new found" FS mom friends, who I feel like I have known forever and there is a definite purpose to our situations and why we have crossed paths in this life. You are all amazing and inspirational!

Generous in LOVE, SUPPORT and PRAYER! I am forever thankful. My family is forever thankful.

Most importantly, Thank You God and the power of prayer!!

God of all blessings,
source of all life,
giver of all grace:

We thank you for the gift of life:
for the breath
that sustains life,
for the food of this earth
that nurtures life,
for the love of family and friends
without which there would be no life.

We thank you for the mystery of creation:
for the beauty
that the eye can see,
for the joy
that the ear may hear,
for the unknown
that we cannot behold filling the universe with wonder,
for the expanse of space
that draws us beyond the definitions of our selves.

We thank you for setting us in communities:
for families
who nurture our becoming,
for friends
who love us by choice,
for companions at work,
who share our burdens and daily tasks,
for strangers
who welcome us into their midst,
for people from other lands
who call us to grow in understanding,
for children
who lighten our moments with delight,
for the unborn,
who offer us hope for the future.

We thank you for this day:
for life
and one more day to love,
for opportunity
and one more day to work for justice and peace,
for neighbors
and one more person to love
and by whom be loved,
for your grace
and one more experience of your presence,
for your promise:
to be with us,
to be our God,
and to give salvation.

For these, and all blessings,
we give you thanks, eternal, loving God,
through Jesus Christ we pray.
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Update 3
Posted by Sarah Jones
38 months ago

I was discharged from CHOP today (2/9/14) around 12:15pm. Finally settled and resting in our hotel. Will definitely be updating all soon, but for now I am trying to rest and recover. The doctors and staff, although very pleased with our recovery so far, gave strict bed rest orders. I am not use to this extreme pain and all these narcotics/prescription medications. Hoping I can get a clear head and body will recover a bit more soon so I can express myself to you all. I am sincerely thankful, grateful and blessed! But until then Tony and I wanted to get this quick post out.......
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Update 2
Posted by Sarah Jones
38 months ago
Update: Shauna & baby "D" underwent surgery 2/5/14 and everything went very well! Shauna will be in recovery at the hospital for a minimum of 4 days and will follow up with bed rest in a hotel in Philadelphia, until an opening comes about at the Ronald McDonald House in PA. She intends to be in touch once she is out of recovery, and wishes to thank everyone in the meantime for the wonderful kindness and outpouring of generosity. Sending lots of love on behalf of the Demkowitch Family XOXO
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Update 1
Posted by Sarah Jones
38 months ago

"December 30, 2013- the day our world was turned upside down.....

It was an exciting day for our whole family, the kids and I were getting ready to go to "meet the baby". It was my "halfway" ultrasound for anatomy and routine prenatal care. I was so excited to have Alana and Evan experience life before birth. I knew for them to hear that heart beat would definitely be something amazing. Tony got home from work just in time to go with us. Thank God!
The words we heard, not even hours later, will stay with me forever.....

The office directed me to Upstate in Syracuse for furthur testing. One week later it was confirmed that our baby has Spina bifida (myelomeningocele). A birth defect in which an area of the spinal column doesn't form properly, leaving a section of the spinal cord and spinal nerves exposed through an opening in the back.
The most common and serious form of spina bifida is called myelomeningocele (my·e·lo·me·nin·go·cele) (MMC), in which part of the spinal cord and surrounding nerves push through the open bones (vertebrae) in the spine and protrude from the fetus' back. Usually, the exposed spinal cord and nerves are contained in a sac that is exposed to amniotic fluid. Continuous bathing of the fragile developing spinal cord in amniotic fluid over the course of gestation is thought to result in progressive neurologic injury. Until recently, spina bifida treatment was relegated to post-birth surgery after damage from continuous exposure to amniotic fluid was already made.

Our local doctors and the doctors in Syracuse have been wonderful, but Tony and I decided from the beginning that we were going to go wherever we had to go to try to educate ourselves more about this disease and find the best place to care for our baby. It has now been 3 1/2 weeks, I am in my 5th month of pregnancy and getting ready to relocate to Philadelphia until the baby is born. You see, we were recently evaluated and qualified for a fetal surgery that will give our child a chance for a better quality of life. I have prayed on this decision for awhile now, and although I am terrified, I know in my heart this is something I HAVE to do! Tony and I traveled to Philadelphia less than 2 weeks ago to educate ourselves more on this disease. Children's Hospital of Philadelphia (CHOP) is one of the best in the country, if not the world. I know the baby and I are in the hands of an amazing group of doctors and surgeons. The surgery is scheduled for February 5th- I will be 22 weeks and 2 days pregnant.

These past few weeks have changed me forever. I know our lives' will never be the same. And although 12/30/2013 was the day I recieved the worst news of my life, only the best has come out of it. I havent even met this person growing inside of me, yet It has already taught me so much about things in life that I never examined so deeply before. I have learned that a DISABILITY is truly not one at all. To me it is an ABILITY. The ability to see and feel things in such a new and profound way that I cant even begin to describe. These emotions are so raw and intense. This whole experience has brought me closer to God, a feeling of deep faith that I have been praying for my whole life. I have always been grateful for such a wonderful family-immediate and extended. But until now I have never realized how truly blessed I really am. My husband has been my rock. I always have known him to be very strong in mind, but never did I see him in this light. I have fallen in love with him again in a whole new way. My children are angels on earth. So young, yet so understanding. I am so blessed that God chose me to be their mother. Right now I am having the hardest time accepting that I have to leave them. They need me, and I need them. I can't help but feel that this is just not fair to them. They are also sacrificing so much. But, I know that when they are older and can understand more, they will realize I would have, and still would, do the same for them. Our parents and siblings. Our Friends. Our Community. Even strangers. I am so full of sincere gratitude and emotion that I cant even begin to describe. I am lost for words. I know that I have an amazing group of support. There is so much good in this world. I am so grateful for all the beauty that I can see, not just with my eyes, but I mean really FEEL!

Someone recently asked me if I was mad at God. I will not lie, for the first week I was in great denial. I was not mad at God but I was shocked and found myself saying -"why me?" And I still do have my days where my spirits aren't so high and my anxiety is extreme and all I do is cry. But then I realize-"why not me?" I was never mad at God. God has great plans for us. He has plans for us all in this life on earth. I just need to trust in Him. The fear of the unknown is horrible and the "what if's" are excruciating. I know these next few months are going to be full of pain and suffering. But although I cant "see" it now, I know our Lord will not give us anything we cannot handle. So Tony and I will accept this hardship. We will continue to pray for the strength we need to get through this for our children at home, and the one we will be welcoming into this world. And one day, when this child can truly absorb all of this, they will also realize their ABILITY and the miracle of life. All the simply amazing things that he/she taught us before it was even born.

I Still Would Have Chosen You

"If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you...

If God had told me, "This soul would one day need extra care and needs," I still would have chosen you...

If He had told me, "This soul may make your heart bleed," I still would have chosen you...

If He had told me, "This soul would make you question the depth of your faith," I still would have chosen you...

If He had told me "This soul would make tears flow from your eyes that could fill a river," I still would have chosen you...

If He had told me "This soul may one day make you witness overbearing suffering," I still would have chosen you...

If He had told me, "All that you know to be normal would drastically change," I still would have chosen you...

Of course, even though I would have chosen you, I know it was God who chose me for you." Terri Banish.

God grant me the serenity to accept the things I cannot change, courage to change the things I can and the wisdom to know the difference. Living one day at a time, enjoying one moment at a time, accepting hardships as the pathway to peace; taking as He did, the world as it is, not as I would have it; trusting that He will make all things right if I surrender to His will; that I may be reasonably happy in this life and supremely happy with Him forever. Amen"
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$11,030 of $25k goal

Raised by 128 people in 38 months
Created January 27, 2014
Julie DelMedico
25 months ago
34 months ago
36 months ago
Don Pierno
37 months ago
Jamie & Shelly 12 Bennett
37 months ago

Thinking of you guys and God Bless.

Christen & Todd Smith
37 months ago
37 months ago
Gail Pye
37 months ago

Best wishes and prayers to all of you.

37 months ago
Bill & Sondra Roemer
37 months ago
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