Jasmine L.
At 16 years old, Jasmine has been placed on the transplant list for a new set of lungs due to a diagnosis of Cystic Fibrosis a few weeks after birth. At Chasin A Dream Foundation, we have been friends with Jasmine and her family for several years, assisting them with toys and gift cards at Christmas. Jasmines younger brother also has a diagnosis of Cystic Fibrosis.
We received this letter from Jasmine:
I was asked what I really need at this moment in my life and that is a laptop. I would like a laptop for two big reasons: one being that I have cystic fibrosis and miss school a lot, and now that I’m on the transplant list I will be traveling a lot so the laptop will help me complete much school and help me with my online classes. I take a few online classes such as chemistry, foreign language (mandarin Chinese), and parenting skills. They are all graduation requirements and I really would love to get my credit for them. They are all hard but I love school and I love striving for greatness. So having this laptop will help me complete my assignments when I’m not at home or in school and I can also do my public school assignments online if needed or not attending school for health reasons. It definitely will be a big impact because it will help me graduate on time.
Because of my health issues I have problems making credits up in school so online is way easier for me because I can definitely work on my own schedule and time. So living with cystic fibrosis is many feelings. It’s excessively hard. Complicated sometimes. It’s very emotional at times. Lots of responsibility. Lots of remembering. But on the positive note it’s easy when I’m compliant. It can be fun at times. Taking my pills different ways or finding new ways to make my medicine fun. I try very hard to just make it first priority especially with school and home and my brothers. It’s a lot. I hate having CF. It’s just not something I would wish on my worst enemy. The amount of things I’m dealing with right now isn’t half of what I’ll have to deal with later on in the future. It’s so scary. So traumatizing. I cry so much about it all. I’ve never shed so much tears over something. But yes there are amazing outcomes waiting for me in the future when I get my new lungs. Including less medication and a chance to be “normal” Ever since I was born I’ve never up to now felt normal.
I’m so jealous of how everyone else around me gets to be happy and enjoy life with normal bodies. All the medication and medicines became just another day of school for me. It’s just everyday never have to think about doing them. I go to public school but I feel like I miss so much more school rather than when I actually go. Being on a lung transplant list…. it’s adrenaline rushing. It’s nerve racking. Scary. Exciting. I really at times wish it was just all over because it’s so hard waiting. Although it’s only been a few days I’ve been waiting it’s still the fact that I’m waiting for a pair it gets me everyday!!! But I know that getting these lungs will once again…. give me an amazing second chance at a normal easy breathing life. And I will be able to do more things in life. I really can’t wait but I also can. I’m just ready. My confidence level took so long to build up since I found about my bad lungs but I’m so overly confident I would love love a Apple laptop that I’ll be able to travel with, for school and just the fact that I will be dealing with a lot of out of school health appointments.
March 1, 2018:
We surprised Jasmine yesterday at the Apple Store with a brand new laptop. There is video of this on the Chasin A Dream Facebook page. She was so excited and the staff at Apple, Garden Mall, could not have been more engaging and helpful. One of Chasin A Dream’s donors, Donna Lewis, fundraised the money to purchase this for Jasmine and was also there for the surprise. When the store manager realized what was happening, he came out, introduced himself and had Jasmine pick out a wireless headset. That was incredibly thoughtful and so appreciated. I didn’t think Jasmine’s face would light up any more than it already was, but it sure did. We had a blast taking photos against Apple’s picture wall. This is what Chasin A Dream is all about. Jasmine now can continue her studies while she is away during transplant and this computer will carry her through college. She has plans on going into the medical field and becoming a Gator. Her transplant will be taking place at Shands so she said “maybe I’ll just stay.”
July 2018:
Shaneeza Singh: “So as we leave for our 2 or 3 days stay in Gainesville. I am leaving my husband and my son who I love dearly. Going on this trip, it’s not for fun it’s to save our child life as a mom or dad you always want to take your kid’s pain away. We have been there for her for 17 yrs now and I have no regrets. Jasmine, your dad and I can sacrifice our lives for you this is just one more bump on the road that you have to get through and we will be there for you. Then hopefully sooner then later you would have the biggest one of all your double lungs transplant. I just pray that you get a clean bill of health sooner than later. We love you very much and hope you can live a very long life. You have many plans for the future. #cfsucks Gainesville here we come thanks everyone for your support ”
January 2019:
A letter from Jasmine’s mom:
I decided to repost this picture because come to think about it this is how jasmine lungs look like. It’s just the shade area is more, I don’t know if she look at her ct scan and draw this picture or it just came to her. When I took her for a check up at St. Mary’s she lost a few points on her pfts, she goes back to Gainesville next week not sure what to expect. It could be bad news or good news - with jasmine we’re on a rollercoaster with her. On the plus side she did gain weight. It’s a new year I know we have a lot in store for us, we just can’t prepare for it all but we trying. We have a lot of friends that is doing a lot to help us. We thank you from the bottom of our hearts. Also we have families that’s helping- you know who your are. Thank you from the bottom of our heart. Who would think any coolie family would have to go though what we go through, who know about CYSTIC FIBROSIS. Jasmine and Krishan look as normal as any other kids. This disease kills you from inside. Not a lot of caribbean ppl know about CYSTIC FIBROSIS. I had to learn how to insert a feeding tube in Jasmine’s nose when she was a baby, every 6 months I have to change her feed tube, change pic line dressing, flush all sorts of tubes, clean staples on her stomach when she had surgeries (big ones and small ones ). I had to learn how to hook her up on iv antibiotics at home. When I see blood I feel like I will faith but since having Jasmine I have to have a really strong mind. I to do everything I have to do for her- and yes we do it all for Krishan too. We don’t ask anyone for anything not families or friends. You want to help that’s fine, but this is our battle and it feel good not to be doing it all by ourselves. As 2019 start everyone saying what they grateful for I am grateful for my hard working husband. I am grateful to have my kids with us for another year. I am hoping that this year would be the year that Jasmine gets her new sets of lungs. I stop thinking about the past and not so much thinking about the future, but living in the present taking it day by day. Living the best life we can. Kris and I are busting our butts off to provide for our kids and they know that.
October 11, 2019:
Jasmine has officially been placed on the Transplant list for a new set of lungs. She and her family have temporarily relocated to Gainesville, Florida where the transplant will occur.
In her own words: “A lot of emotions venture through me since my new journey has started... I was always so doubtful as to if I should post something about this news but like my mom says "EVERYONE doesn't need to know everything...but there are some that DO still care and love to follow through with me on my journey" so on SEPT 10, 2019 at 1:30pm I was officially put on the list for a double lung transplant and was told within the next 3 months I can be expecting... as 18 years went by this is all we've all been waiting for and its finally happened.. I have been just on a train ride of emotions over the weeks hence why I didn't say anything but one of the major emotions definitely is ANXIOUS!
I want it to be done. I want these lungs more than ever but waiting is such a process it gets me so mad! But as that being said.. my new home for a few months.. will be Gainesville, Fl. Life will be hard just adjusting... but I know in the end it's all for the better. As I PACK up today to leave I remember that when I come back to UNPACK I will be breathing so much freely and will be doing the things I could never do! It's a hard journey but I love every single one of you who support me from day one, you don’t know how much it helps me... I was told it's okay to be to yourself but don’t push any support away so I'm letting you guys in. With all this being said... Goodbye WPB and bad lungs... Hello GA and double freedom!
P.S. I'm posting this for support and to let the people who know my story to know what life is finally giving me after 18 long hard years! NOT sympathy, NOT social media fame, NONE of that etc.”
December 17:
Another update from the last... so 17 days now from the last and this is all I've had! No more crazy coughing, I can breathe so much better, my mucus is FINALLY clear in SO LONG! literally a good years that I haven't seen clear mucus so I'm so excited I am still in awe that I'm taking this medicine gods got me I know it. I am gaining weight. I look good and not on no cocky stuff but I've had my own father tell me I'm looking fat and I FEEL SO GOOD TO HEAR THAT! I haven’t been in the 90s in so long!!! Omg. So this is the only side effects I've had now they are getting lesser and lesser as my body gets used to it‼ love everyone who's been supporting me even if it isn’t that many.
TRIKAFTA!! you are hopefully gonna be my miracle I'm praying and so blessed to be apart of this! Stay tuned for I'm hoping weekly updates If not daily
January 2020
A Note From Jasmine:
So on January 15th. I had my first appointment since started the new drug TRIKAFTA... 3 months as of yesterday on it and WOW! as my father said I been working hard for this appointment, and as he said and so he wasnt wrong because not only have I been taking this magical pill but I've been doing my shakes, my treatments, exercising even more now, and just staying on such a positive mind and all I can say still Is WOW! So my results included (p.s. this is from my last appointment in October) I went from 91lbs to 95lbs in weight, my oxygen pulse went from 92 to 94 *that's considering I got sick in july for that whole month if you guys remember * , my pfts level (the lung test you guys see me blowing in the provided videos above) from 33% to 48% in 3 months!!! I will say this and I'm not exaggerating I did shed some tears... it was so hard for me to see those numbers go up because I never thought in my years of fighting that I could touch numbers THAT high in such little time and actually just have a drug that is HELPING me! But those were my results!😣🙏🏽 And one more part that idk why I always leave out but I guess cause I'm still in shock... but I always thought I'd get deactivated meaning If put on a transplant list you are not taken off in case you end up needing it within that year they can just activate it to start looking again for a donor BUT.... what happened to me yesterday was so bitter sweet because last time I cried about transplant I was scared to get it but now I was crying cause of happiness , I got the news that same moment that I was DELISTED... taken off the transplant list... now I know this may be a little to muxh for some to believe or some may have their opinions but for ME. For my parents this has to be THE best news and such a huge weight lifted off because it so nerve racking because your always waiting to get a phone call wether it be In the a.m. or p.m. but now... WOOO... such a huge relief... all I gotta say after updating the ones I know care alot about me and etc. Is god is great, I always knew he had me in his mind but never knew how much he got me and I can say God got me and I will be okay.. i have to continue to do EVERY SINGLE THING the same but I know this new medicine is doing something for me and I always thought it only affected me but its effects the people that love me and care for me alot and sure not physically but definitely mentally and I'm so happy and just so very excited to where I begin next! Thank you everyone who supports me near and far i love you guys and truly me and my family appreciate any kinda support we get. I'm making this post because its huge news about MY health and alot of my family has followed through on my journey and some deserve to know this! Anyways thank god for this medicine and my new quality of life! It feels amazing and definitely gonna just continue to get greater from here! 🙏🏽😘😘😘”