Support Violet Rose and her family

Support Violet Rose and her family

From Violet Fuchs

Lets raise money to help Violet and her family with medical costs and equiptment she needs. Help Violet keep on smiling!

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Recent Updates

Update #1

over 3 years ago

Thank you all for your donations and support and spreading the campaign around!! We have been able to get a new seating device for the floor so Violet can sit side by side with her beloved sister Lila at home. This is so important because Violet lights up with smiles when her sister is able to interact with her socially at that level..Lila can help her sister hold a Barbie and play with her. It brings much joy to our home.
We also got a crawl assist machine to help Violet know the feeling of moving while crawling and we are excited to start this in her therapy routine!
Our family has begun the construction of Violet's therapy room and are starting to get all the supplies and equipment for it now. All these things come from your love and concern to help Violet Rose get stronger and live the best life possible.
We are also super excited to announce our family received a letter from the National Institute of Health Undiagnosed Disease Program letting us know Violet was selected to come and participate this year in their program. This is end all be all for those ( ages young to old ) who suffer from an undiagnosed disease, where the best scientists,researchers, and doctors come together to try to figure out the cases that have not been able to be diagnosed by top doctors and hospitals. We hope and pray that what and why Violet suffers from is discovered, so that our family can have some understanding of it, and also the hope of treatment will be closer! Keep the Prayers for Violet Rose coming!

More Info

Violet is a sweet angel who fights each day  to live with basic function. When she's not  ill or in the hospital- she is all smiles and she lights up the room.

She just celebrated her second birthday!

But suffering from a rare undiagnosed disease has made those two years a great struggle for Violet and her family. She's completely dependent and get ill very easily. Her home is filled with hospital equipment to help keep her out of the hospital when she is sick,which unfortunately has been more than half her life.

She needs 24 hours assistance, day and night- which is done solely by her loving family due to the fact we do not qualify for nursing services through state funded programs and it is not included in the family's insurance plan.

Violet has an undiagnosed genetic disorder. She has been to several hospitals and consulted with top specialists around the entire country. She has undergone medical testing paid for by insurance as well as specialized tests paid for out of pocket by her family. She remains an unsolved medical mystery. She is currently on the wait list to be involved  at the National Institute of Health's undiagnosed disease program .

Here is some back round on Violet Rose:

- She has progressive hearing loss. Currently 65+% of her hearing is gone. She wears hearing aids in both ears

-She is cortically blind. She only responds to different frequencies of light

-She does not speak. She is unable to communicate

-She is hypotonic. She is unable to sit by herself. She is unable to crawl- let alone stand or walk. She does not have protective reflexes so when she tips over she does not know to put her arm out automatically to protect herself.

-She has lowered immune system. Unfortunately she is sick more often as she is well.

-She needs home oxygen  when sick.

-She has a g-tube  ( a permanent surgically placed tube in her body ) for partial nutritional feedings/medicine and all liquids. She aspirates liquids into her lungs when swallowing.

-She suffers seizures.

-She goes to therapy every day, if not several of them. It alternates between physical therapy, occupational therapy, vision therapy, speech/feeding therapy, and hearing therapy

-She needs to be held almost all the time. She does have a wheelchair, but she has a difficult time in medical equipment that she needs to be strapped down into, due to sensory issues that cause her body to freeze up. The same goes with bathing her in her bath chair.

-She responds well to physical input and rigorous play.  Most of all she responds to love and kisses--which she gets a lot of. Especially from her big sister Lila

Violet is normally a very sweet and happy baby when given the care she needs.

Her current needs are as follows:

-Cover for wheelchair for when shes outside ($250)

-A conversion of our mini van into becoming a wheelchair accessible van ($ 25,000 )

-converting garage into a therapy room ( $6,000)

*Violet currently has several pieces of large medical equipment and will receiving more as she grows. We do not have the space for it in her room or any other room. Having a space for all of the therapy equipment will make her daily need for using it more accessible and it will open  for additional tools.

-Ramps put into front door, door from house to garage, for recessed living room, for door from house to outdoor area (@ $850-$1,000 each)

-financial aid to help the family effort nursing services for 5-6 hours a day 5 days a week (@ $1000 per week )

There are also lots of therapeutic tools we purchase for her trying to find new ways to stimulate her. The majority of them are not covered by insurance unfortunately.To view and example, you can look at the Upsee walking devise which you can see on the linked youtube videos. 

https://www.youtube.com/watch?v=cVVjyl0Zmuk

Should you choose to help support Violet with a donation, please feel free to do so on this site, or email missfuys@yahoo.com to get an address to send a check for the fundraiser. And always prayers for strength, good health, and miracles are appreciated.

Thank you all for your support. Go Violet !

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Violet Fuchs posted a new update:
over 3 years ago

Update on what's new for Violet!

Thank you all for your donations and support and spreading the campaign around!! We have been able to get a new seating device for the floor so Violet can sit side by side with her beloved sister Lila at home. This is so important because Violet lights up with smiles when her sister is able to interact with her socially at that level..Lila can help her sister hold a Barbie and play with her. It brings much joy to our home.
We also got a crawl assist machine to help Violet know the feeling of moving while crawling and we are excited to start this in her therapy routine!
Our family has begun the construction of Violet's therapy room and are starting to get all the supplies and equipment for it now. All these things come from your love and concern to help Violet Rose get stronger and live the best life possible.
We are also super excited to announce our family received a letter from the National Institute of Health Undiagnosed Disease Program letting us know Violet was selected to come and participate this year in their program. This is end all be all for those ( ages young to old ) who suffer from an undiagnosed disease, where the best scientists,researchers, and doctors come together to try to figure out the cases that have not been able to be diagnosed by top doctors and hospitals. We hope and pray that what and why Violet suffers from is discovered, so that our family can have some understanding of it, and also the hope of treatment will be closer! Keep the Prayers for Violet Rose coming!

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