Ari's Medical Treatment Fund
Donation protected
Our twin boys, Ari & Kaleb, were born extremely premature at 24 weeks and 3 days gestation (15 weeks to early) in June of 2013. Ari weighed 750 grams and was 9 inches long, and Kaleb weighed 730 grams and was inches 9 inches long.
Kaleb came home in 3 ½ months from the hospital, just 2 weeks before his actual due date in late October 2013. Although he has had his share of rough times, he is now a thriving, silly and sweet 2 year old with a huge heart and is meeting all of his milestones.
Ari spend the first 5 ½ months of his life in the NICU (Neonatal Intensive Care Unit). Ari was forced to battle with many different issues, some of which included chronic lung issues and the ability to breathe on his own, kidney failure, hernia surgery, and eye surgery for ROP (Retinopathy of Prematurity) and seizures among other things. We almost lost him 3 times but time and time again he has proved that he is a fighter. He came home on a feeding tube as he would aspirate when fed orally and 7 different medications to control kidney function, reflux and mostly his breathing. Ari also came home with a diagnosis of ANSD (Auditory Neuropathy Spectrum Disorder) which is a hearing disorder. He failed the hearing test before coming home as well as several others after that. Ari also left the hospital with a feeding tube as he was not able to bottle feed due to aspiration into his lungs and an apnea monitor that let us know if and when he stopped breathing.
We were absolutely thrilled when both of our boys were finally home yet very concerned with what the future would hold.
Upon arriving home therapies started right away. He is receiving Physical Therapy, Occupational Therapy, Developmental Therapy, Speech Therapy, Hearing Therapy and Swimming Therapy. We also see an Alternative Medicine doctor that works with laser and acupuncture therapy.
In time we were able to get Ari off of all his medications and he even began to take the bottle although it needed to be thickened as he still couldn’t tolerate thin liquids. His lungs became better and better and now show no sign of chronic lung disease. He finally stopped crying/screaming all the time after being home for 5 months and started to sleep for more then 20-30 minutes at a time. We noticed that he started to react to some sound. We actually started seeing the light at the end of the tunnel. Our little boy who has been through so much was finally starting to get better.
As time went on we started to notice that Ari was having a hard time with coordination, holding his head up, rolling over, sitting, standing, and no trunk control. The therapist kept telling us it is due to his high muscle tone. We started to seek out even more doctors then we have already been seeing. Next was an MRI after seeing the Neurologist. The MRI came back confirming that there is no brain damage but the Corpus Callosum was thin, which may or may not be due to prematurity. We were told to come back in 6 months. In the meantime we went to see a Physiatrist. The Physiatrist told us that Ari has Spastic Cerebral Palsy but he seems very determined and she has hope that he will walk, sit and be completely functional. To help him along and relax his muscles, Baclofen was prescribed. We were told to come back in May 2015 when he was closer to 2 years old to try Botox. Although Botox is not FDA approved and can have several side effects, we decided we would try it when the time came as it could help. Baclofen made him irritated and he was constantly in a daze and not completely aware of what was going on. We went back a couple months later and were weaned off the medication as no real progress was seen. It took a couple of weeks for Ari to be his happy self again.
Ari turned 2 in June of 2015 and he is still not sitting, walking, crawling, barring weight on his feet, holding his head up for long periods of time and still no trunk control. Physiatrist now states that he is no longer a candidate for Botox and that she is concerned because she is not seeing much progress. She told us that the chances of Ari having control of his body, being able to sit and walk were becoming slim.
We were not willing to give up on our child. In fact it pushed us even more. We started to research what else we can do. We came across Stem Cell Therapy. We started to really look into it as it is not something that is done here in the states. The more we found the more hope we started to have. We spoke with the staff at the Stem Cell Institute in Panama City, Panama and they believe that Ari would benefit from it. We have also spoke to 4 different family that live in the U.S. that have already taken their children there and each one of them is a success story of its own. We found a doctor in New York that specializes in Cerebral Palsy, that has been to Panama and was able to see the work they do there and she actually sends some of her patients down there. Fortunately we were able to talk to her regarding Ari’s situation and what her thoughts and experiences were with Stem Cell Therapy. She was able to provide us with lots of information and what we should and should not expect. She also told us that Ari could benefit from this. We spoke with his therapists and they all say this is something that we should really try. Lastly we spoke to his Alternative Medicine doctor, and he was able to tell us of some patients that have had Stem Cell Therapy and had positive results from it. He was also able to explain how the process works in a language that we could understand. All in all, Ari’s entire medical team believes that this could tremendously help.
This procedure is extremely expensive and not something that we can afford to pay for ourselves and it is not covered by insurance.
We are asking for help to raise the money we need to take our son to the Stem Cell Institute in Panama City, Panama to get the treatment that can help him get better. For a chance to be able to gain control of his body, to sit, to walk, to crawl, to have a fighting chance to live a life out of a wheelchair.
Kaleb came home in 3 ½ months from the hospital, just 2 weeks before his actual due date in late October 2013. Although he has had his share of rough times, he is now a thriving, silly and sweet 2 year old with a huge heart and is meeting all of his milestones.
Ari spend the first 5 ½ months of his life in the NICU (Neonatal Intensive Care Unit). Ari was forced to battle with many different issues, some of which included chronic lung issues and the ability to breathe on his own, kidney failure, hernia surgery, and eye surgery for ROP (Retinopathy of Prematurity) and seizures among other things. We almost lost him 3 times but time and time again he has proved that he is a fighter. He came home on a feeding tube as he would aspirate when fed orally and 7 different medications to control kidney function, reflux and mostly his breathing. Ari also came home with a diagnosis of ANSD (Auditory Neuropathy Spectrum Disorder) which is a hearing disorder. He failed the hearing test before coming home as well as several others after that. Ari also left the hospital with a feeding tube as he was not able to bottle feed due to aspiration into his lungs and an apnea monitor that let us know if and when he stopped breathing.
We were absolutely thrilled when both of our boys were finally home yet very concerned with what the future would hold.
Upon arriving home therapies started right away. He is receiving Physical Therapy, Occupational Therapy, Developmental Therapy, Speech Therapy, Hearing Therapy and Swimming Therapy. We also see an Alternative Medicine doctor that works with laser and acupuncture therapy.
In time we were able to get Ari off of all his medications and he even began to take the bottle although it needed to be thickened as he still couldn’t tolerate thin liquids. His lungs became better and better and now show no sign of chronic lung disease. He finally stopped crying/screaming all the time after being home for 5 months and started to sleep for more then 20-30 minutes at a time. We noticed that he started to react to some sound. We actually started seeing the light at the end of the tunnel. Our little boy who has been through so much was finally starting to get better.
As time went on we started to notice that Ari was having a hard time with coordination, holding his head up, rolling over, sitting, standing, and no trunk control. The therapist kept telling us it is due to his high muscle tone. We started to seek out even more doctors then we have already been seeing. Next was an MRI after seeing the Neurologist. The MRI came back confirming that there is no brain damage but the Corpus Callosum was thin, which may or may not be due to prematurity. We were told to come back in 6 months. In the meantime we went to see a Physiatrist. The Physiatrist told us that Ari has Spastic Cerebral Palsy but he seems very determined and she has hope that he will walk, sit and be completely functional. To help him along and relax his muscles, Baclofen was prescribed. We were told to come back in May 2015 when he was closer to 2 years old to try Botox. Although Botox is not FDA approved and can have several side effects, we decided we would try it when the time came as it could help. Baclofen made him irritated and he was constantly in a daze and not completely aware of what was going on. We went back a couple months later and were weaned off the medication as no real progress was seen. It took a couple of weeks for Ari to be his happy self again.
Ari turned 2 in June of 2015 and he is still not sitting, walking, crawling, barring weight on his feet, holding his head up for long periods of time and still no trunk control. Physiatrist now states that he is no longer a candidate for Botox and that she is concerned because she is not seeing much progress. She told us that the chances of Ari having control of his body, being able to sit and walk were becoming slim.
We were not willing to give up on our child. In fact it pushed us even more. We started to research what else we can do. We came across Stem Cell Therapy. We started to really look into it as it is not something that is done here in the states. The more we found the more hope we started to have. We spoke with the staff at the Stem Cell Institute in Panama City, Panama and they believe that Ari would benefit from it. We have also spoke to 4 different family that live in the U.S. that have already taken their children there and each one of them is a success story of its own. We found a doctor in New York that specializes in Cerebral Palsy, that has been to Panama and was able to see the work they do there and she actually sends some of her patients down there. Fortunately we were able to talk to her regarding Ari’s situation and what her thoughts and experiences were with Stem Cell Therapy. She was able to provide us with lots of information and what we should and should not expect. She also told us that Ari could benefit from this. We spoke with his therapists and they all say this is something that we should really try. Lastly we spoke to his Alternative Medicine doctor, and he was able to tell us of some patients that have had Stem Cell Therapy and had positive results from it. He was also able to explain how the process works in a language that we could understand. All in all, Ari’s entire medical team believes that this could tremendously help.
This procedure is extremely expensive and not something that we can afford to pay for ourselves and it is not covered by insurance.
We are asking for help to raise the money we need to take our son to the Stem Cell Institute in Panama City, Panama to get the treatment that can help him get better. For a chance to be able to gain control of his body, to sit, to walk, to crawl, to have a fighting chance to live a life out of a wheelchair.
Organizer
Lera Levenchuk
Organizer
Wauconda, IL
