Friends of Genevieve Rose

Hello dear friends. Thank you for reading our story! We need help to support our daughter Geneveieve Rose. Genevieve was diagnosed with Anencephaly, a hole in her skull with brain tissue exposed, during pregnancy. We were told she would only live few a few hours. She will be three years old on May 9 2014!!!! When she was a month old she had a rare brain surgery to remove the Encephalocele and any exposed brain membrane, and they closed the skin on top of her skull to prevent infection. She has Microcephaly, Lissencephaly, and Polymicorgyria. She suffers from all kinds of seizures. She is blind, she is deaf, she is a quadripledric, and has Cerebral Palsy. She has trouble regulating her core body temperature, has a compromised immune system, has low oxygen saturations sometimes in the 50-70's, and fights with bradycardia heartrates. I could go on and on about her medical issues. (I included terms if you want to google.)

Depsite all of that, Genevieve is one of the most happy and content babies ever!! She does not suffer. She loves to be held and around people at all times. She loves the taste of fruits and sweet things, and gags with vegetables! She loves her baby swing (which barely holds her anymore!) and hates car rides. She weasels her way into mommy and daddy's bed all the time! She does not speak at all, and barely opens her eyes, but she communicates with us just fine. She is the strongest person I know!

She has never really been sick besides the common cold. Genevieve stays at home, with mom, protected pretty much 24/7. She cannot even go to a special needs pre school due to her immune system. Her therapists visit two times a week. This is the reality of her life. But life is good, and God is faithful!

She is our miracle! A living angel. We need to do the best we can for her for as long as she is here, and we know that only God holds the answer to when.

Her family has lovingly made many sacrifices to keep her here, and keep her happy. She has a daddy named George, a mommy Michelle (me!), and three big sisters....Ashley 15, Taylor 14, and Madison 11. Her daddy George is a cancer survivor after major surgery and radiation treatment!! George was out of work starting August 2012 when Genevieve had just turned one year old. His treatments ended in January, and he returned to work again March 2013 just before her second birthday! Genevieve's mom has given up her career when Genevieve was born to be her full time care taker without the help of nursing or respite care. After George's cancer surgery, the entire family had to move during superstorm Sandy. It was hard with him recovering, and no electricity to keep Geneveieve's machines and oxygen running, as well as frigid tempertures that made her struggle to maintain a normal body temp. The older girls were relocated to different schools and friends during their freshman, 7th and 4th grade years. This family has been living through non-stop crisis for 3 and a half years now. That is just the emotional stress.

The medical bills, and costs, and debt is never ending for Genevieve. It seems almost impossible for the family just to survive, let alone make any advancements to help Geneveive, or ever move foward.

We need help with never ending medical bills. We need medical supplies and equipment not covered by insurance, like a pediactric bath chair, wheelchair ramp, and medical bed. We need help purchasing a wheelchair van to safely transport Geneveieve to all of her doctor appointmets with all of her equipment she needs. It would be great to get nursing help every once in awhile to get a small break, or a good night's sleep. We will need to make our home handicap accessible as Genevieve continues to grow. It would be amazing to get her a handicap child swing and something big enough for her water therapy! (That's a big dream! lol)

Please pray for us as Genevieve has an upcoming surgery and hospital stay at Children's Hospital of Philadelphia on March 14th.

Any support at all is a blessing! Even prayers! Please keep close the ones you love, and be thankful for all of your blessings! 
May God bless you as you read this.

Thank you,
Michelle Rusch








Donations

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  • Sharon Rudd 
    • $25 
    • 74 mos
  • Laura mccutcheon 
    • $100 
    • 74 mos
  • Cheryl hen  
    • $100 
    • 74 mos
  • Patrick & Lailanie Barrett 
    • $100 
    • 85 mos
  • Debbie Nolan 
    • $200 
    • 85 mos
See all

Organizer

Michelle Hostler Rusch 
Organizer
Brick, NJ
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