Help my 2 year old fight his rare diease
Donation protected
Help my son fight!
We have been blessed to have raised/saved & took out student loans to cover $3615. So we only need $1685 to be able to move states and get Liam better health care. please even $1 or $5 will add up to our goal. We only have until the end of august, please help us! Liam is no longer getting his hip surgery; his doctor agrees he needs it but doesn't feel comfortable doing it. He has never treated a patient with mps, much less done surgery with the complications that mps can present. He also said that he hasn't done enough research about it. So even though my baby needs it and its doing damage to his body every day he walks; theres nothing his doctors here are willing to do about it.
Liam:
5-21-2013 we found out our baby has an incurable rare disease.(mps) there are treatments that can prolong his life, but his doctors here have never heard of nor treated a patient of this condition. we do not want to wait on them to look up everything and have our son be their guinea pig. (long story behind his docs but they gave up on him months ago telling me they don't know whats wrong and some kids just are sick and stay undiagnosed) We prayed and reached out to everyone; and on the 16th we went to the genecticist only to find out that the test he needs (10,000 whole genome sequencing) his insurance wont pay for. but she said that she wanted to run a test for mps because everytime she sees him it sticks in her head and she can no longer ignore it. it came back positive. mps stands for mucopolysaccharidosis and while there are different branches off of it she thinks he has Sanfilippo Syndrome MPSIIIA. Due to his conditions and how fast he has progressed. even though hes only 2 she says hes progressed as fast as if he was 6. (if that makes sense, which is a lot faster than hes supposed to so she thinks he has some other condition that's making it progress even faster than just the mps) we find out what kind he has for sure on may 30, 2013. heres a video of what our sons future holds: http://www.youtube.com/watch?v=VazAB8Q6u18&feature=player_detailpage
His other conditions include abnormal lordosis,
a arachnoid cyst in his Right Cerebellopontine Angle Cistern with enlarged space around it, Ataxia,Arthritis, Bilateral Dislocated Hips (with Defective ossification, dysplastic acetabella, & damage to his iliac wings bilaterally), Chronic Regression, failure to thrive, finger clinidactyly bilaterally, Developmental Delay, irregular Gait, Hypersensitivity, Hypotonia, Knots in Both Calf Muscles,Hearing Loss, Nonverbal, Osteoponia, Plagiocephaly, Seizures.
He may have a lot going on but at the end of the day hes just a toddler, who wants to play with his cars and watch star trek. He is the happiest little boy you will ever meet and is such a fighter! He fights everyday just to walk and play. Please help me get him the care he deserves! I'm willing to answer any questions you may have.
Why we need help raising the money; my husbands job makes enough for the bills and alittle extra but we are having to use the money we have saved for my husband to be out of work during Liam's upcoming hospital stays for surgery.
Liam is having 4 hip surgeries on June 25 and 4 more in july(he will be hospitalized for 1 week each time) and then put in a spica cast for at least 6 months. Our lease ends in September so we have to have the money to move by September 1st so we can plan and make the move by the end of September. But the earlier the better for Liam; our apartment has agreed to let us out of our lease early if need be so whenever we have the money raised we can move. my husband's job will be transferring him so we don't have to worry about that aspect.
We will be moving into a rented house that has a backyard and will allow us to have some hens so Liam will have safe chicken and eggs as hes allergic to corn which is in 95% of the food in the grocery store (including fruits/veggies as they are sprayed with a corn wax to keep them fresh) I hate asking on here, but I truly feel that this is the best thing for my son, and so I'm reaching out to you my friends today will you help us move to Florida so we can receive better healthcare for our son.
His sister, Ailey, is autistic, with severe speech delays, & sensory processing disorder and they have so many programs there for her also. She also loves water and it would be very therapeutic for her. I know it might seem weird to move states for health care but its not just health care its getting new doctors that have the knowledge to care and help slow down the progression of my son's disorder; along with them willing to still dig deep to find out what else is wrong. His docs here have all told me that it will take years to find out what else is wrong, & hes getting worse weekly (still has some good weeks, but the bad ones are very bad, he sometimes goes days without walking) and so we need help now. I truly feel like that means jumping ship to somewhere else that has the doctors and health care that are willing to try new things.
How the money will be spent:
3,000 is for 1st months rent, 1 months deposit, pet fee (for our rescued cat), and application fees
200 is for gas
1,100 is for moving rental place
500 for electric/water/home phone fees & the first month
250 for play ground set for the kids (only a want, but it would be great for them)
300 for the chicken coop and chickens
Anything extra will be used for other household needs/ & therapy items for our toddlers.
we have raised $200 so far so still need $5,150.
To read everything that's happened to our son & for updates please visit his fb page:
www.facebook.com/fightingforanswers
please if you have any questions just ask; I'm willing to answer anything. Even if you can only donate $1 it will add up and bring us that much closer to our goal. I know this can be done; I have faith in God and feel like he has pulled me to this site.
Thank you so much for reading and God Bless!!
Parent to parent: im a mess right now. I have been waiting so long for these answers, only to find out that theres no cure and he will be taken from us before we are ready. There are so many emotions running through me right now; mainly worry and sadness. But I know that I have to be strong and continue fighting for my son. So I'm here asking you if you can please donate any amount to my son. No amount is too small; and its going towards the best thing in the world; saving my sons life!
Thank you so much for reading all of this & GOD BLESS!
We have been blessed to have raised/saved & took out student loans to cover $3615. So we only need $1685 to be able to move states and get Liam better health care. please even $1 or $5 will add up to our goal. We only have until the end of august, please help us! Liam is no longer getting his hip surgery; his doctor agrees he needs it but doesn't feel comfortable doing it. He has never treated a patient with mps, much less done surgery with the complications that mps can present. He also said that he hasn't done enough research about it. So even though my baby needs it and its doing damage to his body every day he walks; theres nothing his doctors here are willing to do about it.
Liam:
5-21-2013 we found out our baby has an incurable rare disease.(mps) there are treatments that can prolong his life, but his doctors here have never heard of nor treated a patient of this condition. we do not want to wait on them to look up everything and have our son be their guinea pig. (long story behind his docs but they gave up on him months ago telling me they don't know whats wrong and some kids just are sick and stay undiagnosed) We prayed and reached out to everyone; and on the 16th we went to the genecticist only to find out that the test he needs (10,000 whole genome sequencing) his insurance wont pay for. but she said that she wanted to run a test for mps because everytime she sees him it sticks in her head and she can no longer ignore it. it came back positive. mps stands for mucopolysaccharidosis and while there are different branches off of it she thinks he has Sanfilippo Syndrome MPSIIIA. Due to his conditions and how fast he has progressed. even though hes only 2 she says hes progressed as fast as if he was 6. (if that makes sense, which is a lot faster than hes supposed to so she thinks he has some other condition that's making it progress even faster than just the mps) we find out what kind he has for sure on may 30, 2013. heres a video of what our sons future holds: http://www.youtube.com/watch?v=VazAB8Q6u18&feature=player_detailpage
His other conditions include abnormal lordosis,
a arachnoid cyst in his Right Cerebellopontine Angle Cistern with enlarged space around it, Ataxia,Arthritis, Bilateral Dislocated Hips (with Defective ossification, dysplastic acetabella, & damage to his iliac wings bilaterally), Chronic Regression, failure to thrive, finger clinidactyly bilaterally, Developmental Delay, irregular Gait, Hypersensitivity, Hypotonia, Knots in Both Calf Muscles,Hearing Loss, Nonverbal, Osteoponia, Plagiocephaly, Seizures.
He may have a lot going on but at the end of the day hes just a toddler, who wants to play with his cars and watch star trek. He is the happiest little boy you will ever meet and is such a fighter! He fights everyday just to walk and play. Please help me get him the care he deserves! I'm willing to answer any questions you may have.
Why we need help raising the money; my husbands job makes enough for the bills and alittle extra but we are having to use the money we have saved for my husband to be out of work during Liam's upcoming hospital stays for surgery.
Liam is having 4 hip surgeries on June 25 and 4 more in july(he will be hospitalized for 1 week each time) and then put in a spica cast for at least 6 months. Our lease ends in September so we have to have the money to move by September 1st so we can plan and make the move by the end of September. But the earlier the better for Liam; our apartment has agreed to let us out of our lease early if need be so whenever we have the money raised we can move. my husband's job will be transferring him so we don't have to worry about that aspect.
We will be moving into a rented house that has a backyard and will allow us to have some hens so Liam will have safe chicken and eggs as hes allergic to corn which is in 95% of the food in the grocery store (including fruits/veggies as they are sprayed with a corn wax to keep them fresh) I hate asking on here, but I truly feel that this is the best thing for my son, and so I'm reaching out to you my friends today will you help us move to Florida so we can receive better healthcare for our son.
His sister, Ailey, is autistic, with severe speech delays, & sensory processing disorder and they have so many programs there for her also. She also loves water and it would be very therapeutic for her. I know it might seem weird to move states for health care but its not just health care its getting new doctors that have the knowledge to care and help slow down the progression of my son's disorder; along with them willing to still dig deep to find out what else is wrong. His docs here have all told me that it will take years to find out what else is wrong, & hes getting worse weekly (still has some good weeks, but the bad ones are very bad, he sometimes goes days without walking) and so we need help now. I truly feel like that means jumping ship to somewhere else that has the doctors and health care that are willing to try new things.
How the money will be spent:
3,000 is for 1st months rent, 1 months deposit, pet fee (for our rescued cat), and application fees
200 is for gas
1,100 is for moving rental place
500 for electric/water/home phone fees & the first month
250 for play ground set for the kids (only a want, but it would be great for them)
300 for the chicken coop and chickens
Anything extra will be used for other household needs/ & therapy items for our toddlers.
we have raised $200 so far so still need $5,150.
To read everything that's happened to our son & for updates please visit his fb page:
www.facebook.com/fightingforanswers
please if you have any questions just ask; I'm willing to answer anything. Even if you can only donate $1 it will add up and bring us that much closer to our goal. I know this can be done; I have faith in God and feel like he has pulled me to this site.
Thank you so much for reading and God Bless!!
Parent to parent: im a mess right now. I have been waiting so long for these answers, only to find out that theres no cure and he will be taken from us before we are ready. There are so many emotions running through me right now; mainly worry and sadness. But I know that I have to be strong and continue fighting for my son. So I'm here asking you if you can please donate any amount to my son. No amount is too small; and its going towards the best thing in the world; saving my sons life!
Thank you so much for reading all of this & GOD BLESS!
Organiser
Anita Varrassi
Organiser
