On a early morning of February 4 2005 our journey started. The most BEAUTIFUL, little and delicate thing I have ever seen. With only seconds in this world was for the first time (of many over time) rushed to the NICU. That was only the start of our roller coaster of emotions. We have had good and bad years BUT I have never doubt the force of nature Nadeysha is and how far she can get.
FIFTEEN YEARS later we keep fighting against a world full of challenges. Despite many surgeries and hospitalizations Nadeysha have NEVER stop smiling. Her will to keep going is beyond words can describe. She is the strongest, bravest, happiest person I have ever met.
The best part the privilege to call her my daughter!
I have learn everything from her. To be patient, to be resilient, to see everyday miracles, to enjoy the simplest things in life, and many many other things.
Anyone who has met her will agreed when she smiles her eyes shine like a full moon in a very clear night.
Nadeysha has multiple disabilities and diseases. Among others Severe Cerebral Palsy and Lennox–Gastaut syndrome (LGS) which is a complex, rare, and severe childhood-onset epilepsy. It is characterized by multiple and concurrent seizure types and cognitive dysfunction. Permanently requires 24hrs ventilator, oxygen, g-tube and depends of a wheelchair to move and a caregiver to do all her care.
Since she is in a very high risk during the pandemic due to her respiratory disease made her being out of home a very rare option. Medical appointments being the ONLY place we have visit this year.
With the exception of TWO incredible visits to the park! YES!
For this reason we are not able to use the transportation supplied by the insurance to avoid any exposure. This meaning only relying in our van to travel short or long distances. But now she is too big for regular boosters and needs extra positioning.
We are in a need of a special booster seat for her to be safe and enjoy her small chances of fresh air. But as you may already now this means a highly expensive equipment and insurance does not paid for it. I will be using part of the money raise to entirely cover the Convaid Carrot 3 booster seat for $2,295.00 plus shipping charges.
Due to the pandemic she is also unable to go to school and participate in therapies out of the house. Doctors have strongly recommended NO CONTACT unless is strictly necessary. Meaning home is the only place to be, leaving the only options to be her bed or wheelchair. The wheelchair is not the most comfortable place for her due to her hip dislocation and she is able to use it for less than 3 hours a day. Which makes her be bound to her room and bed for comfort.
It breaks my heart seeing her day and night in her bed not having any other options.
Is this why the rest of the money will be use for a P Pod chair for
for the amount of $2,915.00 plus shipping charges. This will be an alternative seating for home that will provide all the clinical benefits needed, while allowing her to actively participate with the family. This will allow her to get out of her room and participate in family activities while she is safe and comfortable.
Nadeysha is a sunshine on her own please help me make her life brighter.
- Georgianna Stevens
- Megan Rubin
- Melissa Rubin
- Jennyfer González
- Carol Luciano