Help baby Natalya
Natalya will be one Aug 31st... my child has endured more under a year then a lot may in a life time. She has a rare condition called Neonatal Marfan Syndrome, congestive Heart failure, failure to thrive, missing a sector of chromosome 17, server scoliosis which is interfering with her heart function, motor skills, and the function of her lungs. 75% sure she will need a spine surgery to insert a pole to help her back structure.
Natalya has had 4 surgeries already. 3 open heart and one J & g tube surgery.
Her 2nd heart surgery left her intubated for 8 days which caused both lungs to collapse and a fungus to grow. This recent heart surgery 8/22/2017 has really set us in a dark situation. It was a 17 hour surgery and 3 attempts to fix her heart failed and the resolution became having bypass surgery. After finally getting to Picu it only took hours for her to code and need assistance to get her life back... her chest is still cut open due to server swelling.. she is currently on full life support... heart, lung machine and intubation... her future is unknown.
I'm a single mom her father has never ever tried to help support us in any manner and I accept that. But the challenge has become I refuse to leave my daughter's side while she fights for her life ... we live hour by hour not even day by day... her condition is so rare there are always complications and issues with no answers... if we aren't living in a hospital then we are always at special Dr appointments, p.t, o.t ect.
I have always been a very dedicated hard working woman any one who knows me knows that asking for fincial help is very diffucult... but reality is no employer will allow me to call off and take every other day off for my daughter that has special needs. If donations are not possible I understand and respect .... but please share our stoiry to others who may be able to help us through an I'm going difficult time and please pray God helps my innocent sweet miracle child... I appericate the time and effort in advanced... please realize life is short... no-one deserves the hell we have seen... hold your kids...cherish them... love them... recognize life changes in a blink of an eye...
Help spread
Natalya is a 4 1/2 month old little girl with a very very serious heart condition. Its unbearably unfortunte that such a tiny baby has to undergo so much medical attention so new to life. She is currently in PICU with a dilated aorta, Mirtal Valve Prolapse, Conjestive Heart Failure, & she is missing a small sector of chromosome 17. she also suffers form a rare condition called Neonatal Marfan Syndrome.
The Marfan syndrome is a connective tissue disorder that isnt widly known about. She has been receiving Physical therapy, and occupational therapy due to the syndrome causing contractions in her hands,arms, neck and legs. Since birth Natalya has needed to receive very specific care along with her p.t, o.t.. She received in home nurse vists, and is currently on 3 different types of heart medication.
Its unfortunte that we are still looking for answers on why her heart condition contiunally becomes so serve so quickly, with all the specialists on hand they are digging deep with doing genetic test after genetic test. Even with 2 of the 3 blood tests have returned they still have no answers due to her being so young and the condition not completly understood. The results that have been received are compared to other chromosome deplition similar to hers but there are non that come close to her situation. We will not give up hope. We contiune to pray and put the word out in the community and churches but their is also a financial burden with the entire situation. Since Natalya has been born she has been hospitlized 3 times in 4 1/2 months. Each stay is never over night its typical 1+ week stay.
Natalyas mother is a single mom trying to stretch herself thin with the stress of her childs survival and the burden of bills that as adults will never go away. She has always been a very independent, dedicated, hard working woman, but with her daughter having dr appointments that are an hour away, p.t. o.t ect having a full time postion or even part time right now is no longer an option at this current heartbreaking time.
As I mentioned previously shes is currently in PICU awaiting to get results when she will need heart surgery and if not at this current time it will be sometime in the near future. It has been explained with a child being so young the risks of surgery is high because of what needs to be done. As Natalya becomes bigger she can outgrow the size of the repairs they need to do and it can cause more health issue including heart surgery after heart surgery.
A mother shouldnt have to worry about hows she going to pay this and that when her child is in the hospital hanging on for her life trying to find answers so this little angel can have a life.
I ask you from the bottom of your heart to help my neice and my sister. They both have been through an unreal amount of trials and tribulations, this journey has been everything but easy. I cant extend how much I appericate you just taking the time to read this story.
Any amount we will greatly appericate and will melt our hearts with thankfulness. We understand that donations may be hard to come by because lets face it a lot of individuals are struggling and life is hitting them hard, so if you cant give a donation please share the story with other individuals that may be able to help, and mentioning us in your prayers and churches would also be phenomenal. Thank you kindly.
