Proper van for Priscilla and family

Growing up, my family never imagined that we would be undergoing so many trials- all at one time. My sister Priscilla was pregnant with her first child, when she was alarmly told by doctors to terminate the pregnancy. The baby was coming along with severe health issues, which? They did not know, but my sister declined and she continued her pregnancy. My beautiful niece, Kate, was born in 2007 full of cafe au lait spots all over her body but otherwise apparently healthy. Six days later, the doctors and geneticists, told us she has Neurofibromatosis type 1. If you Google it, you can see pictures of the elephant man. Very scary, but Kate still preserves her regular features. The blood tests that followed months later confirmed NF1. The countless MRI's throughout Kate's life would show that she also grows fibromas/ tumors on her nerves throughout the years. And life turned in to a permanent hospital life for my sister, Priscilla.

In 2013 Kate started having severe headaches and pressure in her face, an MRI surely showed a tumor in the optic nerve. The development of it was checked regularly and thankfully the tumor was dormant. NF1 was not passed down in her case, it was a spontaneous genetic mutation. You cannot cure this. Amongst all of that, my sister, whom now had Kate and a beautiful healthy boy, began to homeschool. She wanted Kate to be comfortable and to be able to accommodate to so many hospital appointments- homeschool was the better option. My sister- married, was pregnant with her third baby. Surely this pregnancy should be okay. After all, her second child was healthy. At 18 weeks she was referred to Charlotte, NC high-risk women center. The baby was swollen with fluid in the womb with strange measurements and features. This would be the second child she would be asked to terminate. She didn't. The baby was born with Cornelia De Lange syndrome and life got even harder.

The baby was in the NICU for four months, born at 39 weeks but full of multiple anomalies and unable to feed. In NICU, Kane endured multiple surgeries to repair gastric issues. He was fed through a central line. Thankfully later being switched to a feeding tube. This tiny little baby is the joy of our lives. My sister and kids stayed at the Ronald McDonald house in Charlotte those months. It was hard to help my sister going back and forth through states being that our family lives in Miami. The baby was later transferred to Nicklaus Children Hospital in Miami- where he spent months. My nephew was hospitalized 11 months of his first year of life. My sister's life went through rocky paths in her marriage and in her aspiring nursing education, but she still is a mother to her children and all that it entails.

My niece- Kate, began chemotherapy in Charlotte with vinblastine in 2016, a 70-week slow treatment. Her new tumor did not reduce but was controlled in growth. The baby- Kane, at three years of age, is still tube fed years later, still the size of an infant; has aged slowly, cannot sit, stand, walk, talk, and has had many trials with surgical procedures to come. Recently, Kate grew another tumor, and it just seems the bad news doesn't stop. It hurts everyone in our family so much because nobody can change the circumstances. Kate began chemotherapy January 3rd, 2018. A horrific way to start the year.

Her mass, again in the optic nerve, showed more activity than the previous for which she did chemo in 2016. She is undergoing a 16-month treatment of Carboplatin- Vincristine- weekly. A very harsh treatment. My sister still homeschools 10-year-old Kate and her middle child who is 6. She attends college and is attempting nursing school again. She is a single mom. My sister is undergoing the hardest time of her life and yet still has those issues we all are faced with. Such as car trouble ( she is using someone else's car), hardships with expenses juggling it all. She is a CNA who only works few days a week to juggle the children's appointments.

Please know our family (my mother especially) already does so much to help this situation that is happening in the small town of Shelby, North Carolina where Priscilla lives. It is an overwhelming amount of support that is needed, both physically and financially. And for many years me and my family have given that support and received countless blessings and gifts from friends and family but sometimes all you have to give just isn't quite enough, and this is one of those occasions.

If I could think of anything that my sister needs most in this world, is a van. She is currently using someone else's small car, which has mechanic issues of its own. My niece and nephew both have medical devices implanted which involves equipment, as well as an activity chair and stroller. Being, that they need space for adaptive equipment and to accommodate the three children, a van would be ideal. They need something that will last and can be of less stress as the current car, being that they attend the hospital weekly, as well as all kinds therapies, some of which are an hour and a half away.

Ideally, It would be a new to moderately used van so that she could keep it for many years to come and Kane would have space for his equipment moving forward including a chair shortly, as well as just being reliable enough to get from point A to point B without breaking down which her current car cannot do, which you can imagine is a huge problem considering that the majority of the time spent in the car is driving to treatments with young children inside of the car.

I've set the goal to 25,000 because that is what a dealer in NC is charging for a Toyota Sienna or a Chrysler Pacifica which would be Ideal for Priscillas uses. But any money collected from this campaign will go to solving the transportation needs of Priscilla and the children in any way.

Please consider donating what you can as small as it may be or If you can please spread this to the people you know, my family and I would be eternally grateful for helping us. 

Thank you and have a wonderful day.


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Alfie Ramirez 
Shelby, NC
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