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Hello everyone, please allow me to introduce you to my wonderful, special son, Lino. As most of you must be wondering, how I forced myself to swallow my strong, independent, single-mother pride, and decide to create this GoFundMe for my son? Well, he has a couple extremely rare, life-threatening/terminal, conditions involving his immune system and blood that both have no known cure. After a decade of suffering with recurring illnesses, as his mom, I can’t bear to sit here by his side and watch it anymore. Something has to be done. There has to be another way to deal with/treat what he’s going through. I REFUSE to ever give up on him, no matter what. I’d trade places with him in a heartbeat, I’d take on all his health issues without hesitation-just so he could be healthy and be able to live out all his dreams.
One condition, his hematologist/oncologist, immunologist, and the rest of his team of specialists are calling it an “ALPS-like”diagnosis. ALPS stands for Autoimmune Lymphoproliferative Syndrome. They’re calling it “ALPS-like”, instead of ALPS for certain, because after a decade now of intense, invasive testing- including genome sequence testing with his blood and mine, countless lab draws, a bone marrow biopsy, two lymph node biopsies, an appendectomy, tonsillectomy/adnoidectomy, and so many other tests over the years that I stopped counting after 250 different tests…they keep getting negative or inconclusive results for the ALPS genetic mutation. It is so rare that even after multiple heme/oncs evaluating Lino clinically, hands-on, hospitals, special labs, consults with other doctors from around the country- they still can not figure out exactly what this part of his condition is called. All of the specialists he sees now, get together and have frequent meetings with colleagues from all over. They do this to put their minds and knowledge together to try to come up with new ideas/testing/treatments, or any other ways to help him become healthier, in less pain, and feel overall somewhat well. They can’t cure, but they’re trying to give palliative care the best they can. I appreciate their efforts immensely.
As a mother I would love to know, so we can figure out if there are any other kinds of treatments to help Lino live a better quality of life (and hopefully longer than the prognosis recently given).
One definite diagnosis Lino has is called Evans Syndrome. This is also an autoimmune disorder, but affects his body more hematologically, with his blood cells. Both conditions go hand in hand, and they each make the other one worse, they are also both super rare. There isn’t much information out there about either syndrome.
I’ve had to dig very deep to find minimal (but very frightening) facts. Each condition causes a long list of other medical conditions that Lino has been suffering with on a daily basis for the past decade. It is a lot to list on here, so I would highly recommend checking out the links that I will provide below to learn more about what my sweet baby has been going through almost his entire life.
On top of these syndromes/disorders, and all of the secondary medical issues they cause, as a mother I am constantly worried about my son’s life. Just from the short and long-term side effects from the maintenance treatments he has to take, daily. Between the ALPS-like condition and the Evans syndrome, Lino has been rendered critically immunocompromised, and severely physically restrained. It is so hard for us to do the things we used to love to do together. It breaks my heart.
He was medically pulled out of sports and physical ed at school first, due to his chronic enlarged/inflamed spleen, liver, and lymph nodes (along with the high risk of any other organs following suit at any time for little to no “reason” at all). Lino used to love participating in taekwondo and on a baseball team through school. Due to the dangerously high risk of any kind of blunt trauma to his abdomen that could cause his spleen to rupture, head, or pretty much anywhere else that could cause external and internal hemorrhage. Lino was torn up because he really enjoyed playing with his friends. The baseball team made him feel like he actually belonged in his group of teammates/friends, despite all the bullying.
Not long after that let down, his medical specialists decided that it was no longer safe for Lino to go to school in person due to being exposed to illnesses and viruses that his body is unable to fight off on his own, he was also missing so many days of school that he struggled to catch up.
Between the two main syndromes, he has very little to no correctly working immune system. Instead of fighting off the bad cells/germs etc, his immune system is rebellious and fights off all three lines of his blood cells- red blood cells, especially his hemoglobin, platelets-which causes him to have serious bleeding and cardiovascular risks, that could cause him to bleed out, or internally after the smallest injury that could easily become life/threatening, and his white blood cells-especially his neutrophils, which are supposed to help him fight off any kind of illness, virus, infections, injuries, and so on.
Lino has been chronically cytopenic with every aspect possible, that it is critically dangerous for him to even go out in public. I take him out for doctor appointments that require him to be seen in person, and once a year for our birthdays we will go to dinner and do maybe one special thing (like this year he wanted to go to ismash in Syracuse so bad, that I had to surprise him with it-we had a blast!). ….but, he became sick a few days later landing us admitted in Rochester for 4 days, we were released, came back the next week for 6 days, were released for a few, then had to come back the 3rd week in a row for 9 more days.
The first admission he spiked an idiopathic neutropenic fever (like always…anything over 100.4°F he has to be rushed to the emergency room immediately), he was complaining of headaches, fatigue, weakness, sore throat, and left ear pain. We have a system down (because we live a little over 2 hours away from the only hospital that will treat him currently-the first hospital Upstate’s heme/onc said after 45 years of practicing, she was stuck and didn’t know what else to do for Lino, so she referred us to go to Rochester for a 2nd opinion.). So since we have such a long drive, we have to hurry! Protocol is that I call his heme/onc to let him know what’s going on, he tells us to get there ASAP, and we give him our ETA. As soon as we arrive and check into the pediatric ED, we are led directly into a room where they have the IV supplies, lab draw tubes, and very strong broad spectrum antibiotic bag already hanging and ready to go.
First thing they do is insert an IV (that the poor kid is so used to now, that IVs and blood draws don’t even phase him anymore) then they start the antibiotic first thing. After that’s started, they take a blood sample to check for everything (including his chronic, critically low blood counts), they swab him for everything known to man, and then finally they take vitals and 9/10 he is tachycardic.
I know this is super long, but Lino (and I, as his mother have been through so much, I could go on for days about all of the scares, sleepless nights, trips to the hospitals, and tears we have cried together). The 2nd recent admission (the following week) was due to mouth and esophageal ulcers starting with a fever and the other ear hurting, plus some belly pain. The 3rd and most recent admission for 9 days was due to worsening stomatitis (Mouth/GI ulcers) that he was unable to eat or drink anything by mouth, so he ended up with an NG Feeding tube, that he took so well, all of the nurses were so impressed, and I was super proud of him.
So anyway, let’s jump back to some positive things about my amazing son….Lino is known for his above average intelligence-he is a brilliant 13 year old boy, he spends a lot of time learning and informing anyone he can with the endless random facts about life, the earth, animals, space, and science. These are some of his favorite interests, along with math, and his ongoing hands-on healthcare knowledge that continues to grow each time we have “sleepovers” at the hospital. Lino is admitted so often at Golisano children’s hospital at Strong in Rochester that I always joke with him and call him a celebrity, because most nurses on the unit know him very well and have watched him grow over the years. They’re all so great there and go above and beyond to make him feel special and comfortable. Lino is a mastermind when it comes to the rubix cube, video games, and graphic design things on his (pretty outdated-but he’s still thankful for his) PC computer.
This is Lino’s 3rd year of homeschooling due to his health risks, with the last two years being led by a tutor at home (through the school), and this year is our first time using an online video based learning program. It has been tough for him to keep up due to being sick and/or hospitalized so much, along with the side effects of his medications that cause him to feel like crap, and extremely fatigued on a daily basis.
He was taking mycophenolate for the ALPS, then they decided to switch him back to Sirolimus, and now they’ve recently added Neupogen shots that I have to administer at home, daily. (along with 13 other medications that are either every other day, or PRN-as needed). One main PRN being zofran that he takes multiple times a day due to the GI issues/ulcers that cause him severe pain and nausea daily. These shots cost a little over $400 each. This medication comes with many very serious, and deadly side effects that I stress over 24/7. To the point that I have nightmares all the time and wake up having a full-blown panic attack, making me run downstairs to make sure he is still breathing.
Just some of these serious side effects include, an even higher risk (than he already has from the conditions) of skin cancer, lymphoma, leukemia, bone marrow cancer, blood cancer, and essentially cancer of any organ is possible. He already has had an enlarged and inflamed spleen, liver and lymph nodes for the last decade, but these medications/“maintenance treatments” are known to cause even more enlargement and rupture of the spleen which can easily be deadly. They also include many side effects that are caused by most chemotherapy drugs, like hair loss. Even hearing loss/deafness.
He has been having deep bone pain since we started the shots. This is due to the medication throwing his bone marrow into overdrive which caused the bone pain. He has also been complaining of skin pain across his torso, chest, belly, side of ribs, back, arms, fingertips. He explains this pain to feel like he has huge bruises and the feeling when you bump a bruise or poke it on accident, except he feels that pain constantly.
I’m hoping these side effects fade away soon, but my main worries are the other more serious side effects. If anything bad happens to him because of these shots, I already know I will feel directly responsible because I am the one who has to administer them to him everyday.
The Sirolimus is a strong immunosuppressant used mostly for patients who have had liver transplants so their own immune system doesn’t reject it. So, on top of his already super weakened immune system, this medication puts him at an even higher risk of becoming deathly ill, hence why I don’t feel safe bringing him out in public because he always gets sick. Sorry, this is all so stressful and scary for us, and there’s so much more to it than what I’ve explained already.
Back to Lino….he is the most empathetic, loving, humble 13 year old boy I’ve ever met in my life. His current (2nd pediatric hematologist/oncologist) st Golisano Strong Hospital in Rochester, NY, tells him all the time how special he is and how is is such an interesting medical mystery. Lino was born with jaundice, but other than that, was a pretty healthy baby until around 3 years old.
At that point, I noticed the lymph nodes in his groin appeared to be very large and visible from across the room. I immediately called his PCP (who also happens to be mine from when I was a baby) to tell her about my concerns. She was able to get him in the same day. She’s not one to sugar-coat things, but she is very kind in the way she speaks and cares about all of her “kids”. She told us to calmly go directly to Golisano Children’s Hospital at Upstate in Syracuse NY to see his first pediatric hematologist/oncologist.
At that point we were told he could possibly have lymphoma, leukemia, or some other very scary things. As a first time single mother, I was devastated and terrified of what the biopsy results would reveal. Although the cells looked abnormal under the microscope, the results came back negative for those scary things they were originally thinking, but, this opened a can of worms because now we need to figure out what was causing these enlarged lymph nodes.
After years of countless tests and biopsies, between all of his specialists, they’ve come up with these diagnoses, and treatments so far. The Neupogen shot is used strictly to stimulate his bone marrow (which is normal, by the way-so a bone marrow transplant wouldn’t help) to excessively overproduce neutrophils in hopes that there will be enough to survive the super fast destruction of them by his dysfunctional immune system.
His hematologist/oncologist told me at his 2nd admission just recently within the past few weeks that he has done a ton of research (as far as a study they did in France, with patients who suffer with very similar symptoms) and also contacting other well versed heme/oncs from across the country….he has sadly determined that he truly believes that no treatment available for these rare conditions will ever help Lino. Due to how aggressive his immune system fights his own body systems, and defense mechanisms, no matter what treatment they use, it would not last long enough to make a difference. This is including IVIG, and blood product transfusions. He would have to have them constantly, daily, for it to make a difference. He states that this is the best that his health will ever be, and it is only going to get worse from here.
As a mother, especially a single mother trying to handle all of this, plus life in general with missing work, medical financial expenses, bills adding up, taking care of most things for my mother, and my hours being cut at work, I am not one to ask for help, but I feel like the time has come and I have no other choice. My friends keep telling me to swallow my pride, but I am a giver 100% and I hate asking for help, even if it’s a money-less favor. It makes me feel so ashamed and like a failure.
Right now, I must put those feelings aside because this is all about Lino, what he needs, what he wants, and to try to help him live the happiest days he can, one at a time, for as long as possible.
His doctor said that any illness, especially a virus, a paper cut causing an infection, or a simple small injury could cause him to bleed out or internally, or he could possibly not be able to fight off the sickness and he could succumb to these incurable health issues at any time. If you dig deep enough, you can find that the median life expectancy for Evans syndrome is 7.2 years. He has luckily surpassed that, but his doctor said we are living on borrowed time, and it could happen any day. He also said “I know it’s easier said than done, but you should highly consider moving closer to here (Rochester) because anything could happen, that would make that 2-2.5 hour drive a matter of life or death. We don’t know what else to do at this point. There isn’t enough research done to be able to determine the best way to handle his health issues and make them better.
Lino has asked me multiple times over the years, from a young age, “why can’t I be a normal kid?”. What scares me is now that he is 13, he is old and smart enough to research these things on his own, and I have a sick gut feeling he has been because lately he started asking me out of the blue, “mom, do I have cancer?” “Am I getting cancer?” “Mom, am I going to die soon?” As a mother who has worked in healthcare most of her career, talking to patients about difficult things like this, I still have no idea how to answer him.
Lino has such a positive spirit, he doesn’t want to know any bad news, he would rather not know, and live the rest of his days happily. We’ve talked about this, and that’s the only reason why I haven’t told him the full truth and extent of how serious and dangerous his health has become. Also, because the amount of fear and stress he would experience from finding this information out, would make him sicker, according to the nurses, his hem/onc, and from just thinking about it from a child’s perspective.
I’m reaching out first for healing vibes and prayers to be sent our way. For me, to be able to get through this as a very helpless, and heartbroken single mom, but more so for Lino, whom has been suffering with being sick almost his entire life, with it gradually getting worse and worse.
I know there is no cure available for what he has. His doctor has made it clear that he is now hopeless and we are basically playing a waiting game, where we speed to the hospital 2 hours away every time he becomes ill, they pump him full of antibiotics because they can never find a reason for these idiopathic neutropenic fevers, and then they send him home.
This past admission, they had to insert an NG Feeding tube because another thing his conditions and the medications cause are oral/GI lesions. He’s been swabbed and lab tested dozens of times for viral infections like HSV and they have always come back negative. It’s due to his critical neutropenia and side effects from the meds.
His BMI went from I believe the 67th percentile to the 6th percentile within about a month. This is due to the lesions causing so much pain that he was unable to eat or drink anything for over 2 weeks, even on very strong IV pain meds. This happens often, along with constant daily nosebleeds, multiple times a day.
We are currently home, (thankfully) he is prescribed to drink at least 6-8 ensure protein shakes a day, on top of eating as much as he can. (He said he never wants to eat or drink anything chocolate flavored ever again after this).
After his follow up coming up soon, if he hasn’t gained a sufficient amount of weight since leaving the hospital, we will have to go back to have the NG Feeding tube replaced and spend even more time in the hospital.
Like I said, I hate asking for help, especially financially. So first I ask for healing vibes and prayers, then, if you could simply share this when I post it along with the Venmo and Zelle accounts set up in Lino’s name “Team_Lino313” (Venmo-3515) and (Zelle-I believe they don’t charge fees) contact me for info for Zelle because it won’t allow me to list a phone number or email address. We would appreciate that so much.
If you can afford $5, $10, $20 that would make a world of difference too, but it is not expected at all. I’m thankful for all of those who have reached out showing care and concern for my son and I.
Trying to do this all on my own has me struggling in every aspect you can think of, but my main goal is to raise money for Lino to be able to get the small humble things he would like (since his only way to really connect with other kids his age is through online gaming), and maybe take him somewhere nice where we could explore one of the “wonders of the world” or maybe somewhere closer just to learn about our history hands on. We would both be amazed. Honestly though, just having a little help with the absolute necessities, I (and Lino) would be beyond grateful.
He’s a fast growing boy (height-wise) so he grows out of his clothes and shoes so fast, it’s hard to keep up. I’ve been giving him my tshirts and trading him for the shoes he has grown out of. He could really use a cheap laptop so he can keep up with school a little better while we are stuck in the hospital (and he’s feeling up to it enough to get some done here and there-it would be better than nothing and getting even further behind. I think unfortunately we may have to repeat the 7th grade this year due to him being sick so often.).
Overall, I just want Lino to live as happy and as comfortably as possible for as long as he has left (which I hope and pray is longer than myself because I couldn’t handle ever losing my baby). As his only parent and the one person he knows he can look up to and depend on, I want nothing more than for Lino to know that mommy will NEVER give up on him and his health. All I have to do is look into his beautiful blue eyes and I know our souls will forever be connected. When he suffers, I suffer more. I would do anything to protect him and get the best care possible. Lately he’s been asking me if I can find him a “better hospital to make him better”. I wish I had a magic answer or remedy for him. A lot of people have recommended St.Jude’s Children’s Hospital, but that’s a 17 hour drive for us, and unless he’s admitted/if they do testing and treatment as outpatient, I’d have to figure out how and where we would stay during the time we would have to be in Memphis. I’ve also heard that Boston and Cincinnati Children hospitals are good as well. My fear is that they may not accept out of state insurance and I know I could never afford the type of care he needs. All I can do is research to try to find someone who is an EXPERT in his conditions. I don’t care how far we have to travel, I will do whatever it takes to find him some relief and hope-but with that comes travel expenses and/or gas, food, housing, medical bills, life-long treatments from multiple specialists. I’m trying to save up but it’s so hard when my hours at work have been cut to one shift a week, and then when I find a full-time job, I end up getting written up or fired for missing so much time when he’s admitted in the hospital. It’s a lose, lose, situation. I’ve lost a good amount of weight recently from stress, but also from barely eating anything while in the hospital with him. The bland hospital food isn’t cheap, but I also refuse to eat in front of him while he’s hungry and unable to eat anything by mouth. It’s not fair.
None of this is fair for any child to have to experience. I could think of so many evil, heartless adults living their best lives in this planet who would deserve to suffer like this, but never an innocent child. I would do or give anything to be able to take his pain and suffering from him so he could live a “normal”, happy, stress/care free adolescent life-like every child should be able to.
This is literally just the tip of the iceberg and I could go on for days about all of the medical and mentally traumatic things Lino has gone through, throughout this medical mystery journey, but I feel like I’ve already written a book so far.
If anyone is interested in learning more about Lino, or if you’d simply like to share any knowledge you have or send Lino a personal message of hope or just to let him know you’re thinking of him, and he is loved….please email me and I would be more than happy to give you as much info as I know and send you pictures or proof of this horrible journey we’ve been going through.
Thank you all so much for taking the time to read this and spread your love and blessings our way. We are forever beyond grateful for each and every one of you
*Evans Syndrome
*ALPS- Autoimmune Lymphoproliferative Syndrome
-Neupogen injections (G-CSF treatment trial)
-Sirolimus
(For GoFundMe purposes-this GoFundMe was made specifically for of my severely ill son, Lino. I am his mother, Jeanilyn Young and all donations are intended to go directly to finding and supporting Lino’s quality healthcare and well-being, along with expenses we occur caused directly by his illnesses. We live in central NY state.)
Organizer
Lino TeamLino
Organizer
Utica, NY