Lincoln Avery's Medical Fund

$20,275 of $30,000 goal

Raised by 263 people in 49 months

Our son, Lincoln Avery DeLuna was born December 14, 2013 with a very rare, life threatening neuromuscular disease called X-Linked Myotubular Myopathy. XLMTM affects 1 out of every 50,000 male infants. To put that into perspective, autism currently affects 1 out of every 68 male and female infants born in America every year, according to estimates from CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network. So XLMTM is very, very rare.
 
There currently is no treatment for XLMTM. Many medical journals report that two-third's of XLMTM infants do not live to reach their first birthday. The disease essentially causes severe muscle weakness throughout the entire body. Infants usually have to immediately be ventilated upon birth and require medical life support measures. There is no cognitive deficit.
 
I am happy to say that Lincoln is now almost 5 years old! He is cognitively brilliant. He is fluent in American Sign Language (ASL). He is learning different languages including conversational French and Spanish. He is cheeky and mischievous. He can read sight words, has memorized multiple Dr. Seuss books, is learning math, and can out-wit many adults if they are not careful! He recently had a language comprehension evaluation done and was found to be testing in the 6.5-7.5 year old age range (remember he is ALMOST 5 years old). He continues to defy all the odds. He never gives up.
 
He requires 24/7 monitoring. My home is like a small Pediatric Intensive Care Unit. He has a tracheostomy and a g-tube (feeding tube). He is on a ventilator 24/7. He is fed through a tube in his stomach; it’s full life support. We do have some help with state funded nurses, but it is not consistent. We are supposed to have 24/7 private duty nursing through the state of Florida, but due to budget issues, we hardly ever have full coverage. There is a high turnover rate. When nurses call out (which they frequently do) we have to assume their role because the agencies do not have back-ups. This requires us taking FMLA. We try our best to save our FMLA so sometimes we will watch him all night and still work the next day. There is a revolving door of physician appointments. Every few months my we pack up all of his medical equipment and drive 2 hours to Gainesville for all day doctor's appointments, only then to drive 2 hours back home. He is entirely dependent on us for his care. He relies on us for everything. His body is very weak. He has no head/neck control. He cannot stand or roll over. He can go into respiratory distress easily. He is not able to cough hard enough to clear any mucus in his lungs and therefore we have to do if for him by suctioning down his trach. He sometimes requires oxygen.
 
We have made it through the most difficult trials and tribulations...but have also experienced the most beautiful of highs. Throughout this ordeal, I have come to fully understand what it means for us all to be "on borrowed time." Lincoln has given me new life. He has come so far in such a short amount of time.
 
It is my ultimate prayer that science and medicine will develop a drug to help treat MTM. My hope is that Lincoln will be able to one day receive medicine to improve his physical impairments. For now we continue to care for him, keep him alive and well, cherish every precious minute, and pray for the promising future of modern medicine.

This "Go Fund Me" account is solely for the purpose of helping with Lincoln’s medical care and expenses.  My husband and I both work full time but the medical equipment, medications, doctor's copayments, electric bill, gas in the car to Gainesville, diapers, etc can all add up pretty quickly! In addition we have a wish list of things such as a generator for our home and a converted handicap van for transportation. Thank you for getting to know us. And please feel free to follow Lincoln’s health journey on a Facebook Page called : "Lincoln Avery's Odyssey!" 
https://m.facebook.com/LincolnAvery/?ref=bookmarks
 
“XLMTM is an X-linked disorder of congenital onset that is caused by MTM1 mutations. In comparison to other congenital myopathies, patients with XLMTM have a rather homogeneous clinical presentation. Males are born with severe generalized hypotonia and weakness with respiratory insufficiency. Affected infants are irreflexive and floppy with little or no anti-gravity movements at birth. Ventilatory support is almost always required at birth and often for the duration of life. Many patients require tube feeding due to impaired suck/swallow mechanisms. Ophthalmoplegia and facial weakness are common and contractures of the hips and knees may be present. Affected males typically have a large head size, are long in length, and weigh less than expected for the gestational age. Respiratory insufficiency often complicates the clinical course and is a frequent cause of death in these patients and the median survival is 29 months. Cognitive development is normal unless the central nervous system is compromised by severe hypoxic episodes.” Pierson, C., Tomczak, K., Agrawal, P., Moghadaszadeh, B., & Beggs, A. (2005). X-Linked Myotubular and Centronuclear Myopathies. J Neuropathol Exp Neurol Volume 64, Number 7, July 2005, 64(7), 555-564.

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No nurse today. In the last two weeks we have missed multiple days of work due to Lincoln’s kidney stones. Missing work has hit us financially. If you feel moved to help us we would be incredibly humbled and grateful. If not, please don’t worry. I will do my best to work overtime here in the coming weeks once he is feeling better.
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As you all know we have been through hell and back...literally. The past 3 weeks have been the most excruciating weeks of our lives. Being told that you’re child...you’re happy, joyful, beautiful child... will not survive is beyond any despair I could describe. On February 18th Lincoln was rushed to St. Joseph’s Children’s Hospital. The ER and PICU staff frantically began working on him and found that he had a 80% liver hemorrhage. His hemoglobin was 4 and platelets were 18. Within a few hours the hemorrhage perforated the liver and bled into his abdomen. Doctors explained that they had to do emergency surgery to get the blood out of his abdomen but that they did not think he would survive such trauma. The surgeon said that the liver is so delicate that it can’t be sewn up with sutures. So it would have to be a bleed on the surface that he could cauterize. He did not think he had time to evacuate the blood in his abdomen, find the bleed in the liver, and solve it all in time. For over an hour we waiting in the waiting room feeling every second of despair, helplessness, sadness, etc. Luckily, Lincoln has a strong will to live and a strong heart - he survived. They evacuated 1.5 liters of blood from his abdomen. It’s been 3 weeks of blood and platelet transfusions, monitoring his blood work and lung health, and living in and out of hospitals, all on his road to recovery. We are finally home and are starting to process the trauma we went through as parents. Everything has changed. If you would like to contribute to Lincoln’s medical expenses, here is our GoFundMe account that we have used throughout his 4 years. We ideally would like to raise $1,200. But of course anything and everything is appreciated - money or not. Your love and prayers helped us get through the impossible. We are so happy to be home and looking forward to our new normal. Thank you dearly.❤️
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Hello friends and family,

As you are probably already aware, the past couple of weeks have been extremely challenging. Lincoln has been very ill and has had horrible bouts of respiratory distress. Lots of medial care, sleepless nights, and constant fear. We’ve had to take a lot of FMLA that is unpaid. He is getting better thank goodness but it’s a very, very slow process. We have many more doctors appts happening this month. If you feel inclined to help we would be deeply grateful! If not, no worries. Your prayers, well wishes, and encouragement are enough to keep us afloat. All that matters is Lincoln’s health & wellbeing.❤️
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With Hurricane Irma right around the corner we are having to prepare to either stay safe at home or move Lincoln to a save place with power. Being on full life support (24/7 ventilator support, feeding tube, suction, etc) we cannot afford to lose power for an extended amount of time. So we are doing our best to be as prepared as possible which is proving to be costly. If you feel moved to donate to this emergency fund we would be greatly appreciative.
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Tobe
1 month ago

Come on people..Just look at this precious child & his two loving parents..I'm amazed that financial help for them is coming in so slowly. It's normal for people to feel that they can't afford to help someone else..But try to imagine yourselves in a situation such as Anthony & Maggie are..There's an old cliche' which goes.."""I felt bad about not having any shoes until & met someone with no feet"!!

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$20,275 of $30,000 goal

Raised by 263 people in 49 months
Created March 10, 2015
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Tobe
1 month ago

Come on people..Just look at this precious child & his two loving parents..I'm amazed that financial help for them is coming in so slowly. It's normal for people to feel that they can't afford to help someone else..But try to imagine yourselves in a situation such as Anthony & Maggie are..There's an old cliche' which goes.."""I felt bad about not having any shoes until & met someone with no feet"!!

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