Cure S.M.A- get the government to fund research!
Target:
1000
Sponsored by:
This petition is to hopefully get the government to fund research into finding a cure/treatment for the No.1 genetic killer of children under two, yes that's right the No.1 genetic killer of children under two!
Spinal Muscular Atrophy (SMA) is a neuromuscular condition which causes severe weakness of the muscles. There are many types of SMA including type 1, 2, 3 and adult onset SMA. Depending on which type of SMA a person has will determine how severely they are affected by it. The earlier a person is diagnosed with SMA the more severe there condition will be. Most people have not even heard of SMA yet it is the number 1 genetic killer of children under 2 years old! Just as shockingly, 1 in 40 people carry the gene which causes SMA and they dont even know about it!
SMA type 1 is the most severe type and is usually fatal. Babies born with type 1 SMA are usually diagnosed around 6 months old. These babies often start to show symptoms of SMA within a few weeks after being born and sometimes the mother may notice that during the last few weeks/days of pregnancy that the baby isn't as active and moves around less. SMA affects the voluntary muscles, which includes most of the body's muscles so a baby with SMA will not reach milestones which other babies the same age will be reaching, this includes: rolling over, crawling, sitting unsupported, holding up their head and moving their arms and legs. Babies with SMA are "floppy" and feel limp due to the weakness of their muscles. However, babies with SMA are not atall affected mentally and they are usually very bright and alert! As the SMA progresses, babies with SMA lose the ability to suck and it becomes dangerous for them to feed because they are likely to choke so they eventually need to be tube fed. They can also choke on their own saliva so they have to have suction which isn't very nice and each time they get a cold it is life threatening and they usually end up in hospital with pneumonia which is usually fatal for them because the weakness also affects there lungs, meaning that they find it hard to breathe and impossible to cough! The life expectancy of a baby with SMA type 1 is just one year old!
SMA type 2 affects each person differently and each person will be stronger or weaker than another. People with SMA type 2 are usually diagnosed at around the age of 18 months but this can vary. Children with this type of SMA don't usually start to show signs of the condition until they are around 12 months old. The parents may notice that the child is losing the ability to do some things which they used to be able to do. For example, a child with SMA type 2 may start to crawl, roll over and walk but then slowly they find these activities more and more difficult to do until they can no longer do them. All children with SMA type 2 will eventually use an electric wheelchair and will rely on their parents or carers to help them with daily activities such as dressing, toileting etc. Children with SMA type 2 can usually have a normal diet, however some children may need to be tube fed because the muscles used for swallowing may be affected. The respiratory muscles are also usually affected to some extent because the SMA makes them more prone to chest infections and because the lungs are weak they cannot cough properly and a chest infection can quickly turn into pneumonia. Children with SMA type 2 also usually develop scoliosis (curvature of the spine) which can compromise the lungs even more, so lots of surgeries are done to fuse the spine into a straight position. With the correct medical care, chest care and management children with SMA type 2 can usually live well into adulthood.
SMA type 3 is the mildest form of child onset SMA and the effects of it vary from child to child. Children with SMA type 3 usually have difficulty walking up stairs, standing up from a sitting position and balance can be affected. It is important that children with this type of SMA do regular light exercise to try to maintain the muscle strength that they already have and it is important that they try to follow a healthy lifestyle. Life expectancy is normal.
Adult onset SMA ffects each person differently, depending on which muscles are affected such as the ones closest to the body (upper arms and thighs) or the ones furthest away from the body (lower legs, hands and feet). Adult SMA, like childrens SMA doesn't usually cause any pain, but they can sometimes feel like their muscles are heavy, tired, tingling and also cramp. Life expectancy is normal.
If the government could fund research into a cure or treatment for SMA then many young lives would be saved, babies with type one SMA are dying from this condition everyday, they are healthy, bright children trapped in a body that doesn't work. I myself have type 2 SMA and when i was diagnosed i wasn't expected to reach my teenage years and i am now 18 and doing well. Researchers have been looking into stem-cell treatment and they believe that this could be the answer we are waiting for, however most of this research is taking place in other countries and not as much here in the UK. If SMA was cured then a lot of other neuromuscular diseases would also be cured!
If you agree that the UK government should fund research into a cure or treatment for SMA then please sign the petition!
Spinal Muscular Atrophy (SMA) is a neuromuscular condition which causes severe weakness of the muscles. There are many types of SMA including type 1, 2, 3 and adult onset SMA. Depending on which type of SMA a person has will determine how severely they are affected by it. The earlier a person is diagnosed with SMA the more severe there condition will be. Most people have not even heard of SMA yet it is the number 1 genetic killer of children under 2 years old! Just as shockingly, 1 in 40 people carry the gene which causes SMA and they dont even know about it!
SMA type 1 is the most severe type and is usually fatal. Babies born with type 1 SMA are usually diagnosed around 6 months old. These babies often start to show symptoms of SMA within a few weeks after being born and sometimes the mother may notice that during the last few weeks/days of pregnancy that the baby isn't as active and moves around less. SMA affects the voluntary muscles, which includes most of the body's muscles so a baby with SMA will not reach milestones which other babies the same age will be reaching, this includes: rolling over, crawling, sitting unsupported, holding up their head and moving their arms and legs. Babies with SMA are "floppy" and feel limp due to the weakness of their muscles. However, babies with SMA are not atall affected mentally and they are usually very bright and alert! As the SMA progresses, babies with SMA lose the ability to suck and it becomes dangerous for them to feed because they are likely to choke so they eventually need to be tube fed. They can also choke on their own saliva so they have to have suction which isn't very nice and each time they get a cold it is life threatening and they usually end up in hospital with pneumonia which is usually fatal for them because the weakness also affects there lungs, meaning that they find it hard to breathe and impossible to cough! The life expectancy of a baby with SMA type 1 is just one year old!
SMA type 2 affects each person differently and each person will be stronger or weaker than another. People with SMA type 2 are usually diagnosed at around the age of 18 months but this can vary. Children with this type of SMA don't usually start to show signs of the condition until they are around 12 months old. The parents may notice that the child is losing the ability to do some things which they used to be able to do. For example, a child with SMA type 2 may start to crawl, roll over and walk but then slowly they find these activities more and more difficult to do until they can no longer do them. All children with SMA type 2 will eventually use an electric wheelchair and will rely on their parents or carers to help them with daily activities such as dressing, toileting etc. Children with SMA type 2 can usually have a normal diet, however some children may need to be tube fed because the muscles used for swallowing may be affected. The respiratory muscles are also usually affected to some extent because the SMA makes them more prone to chest infections and because the lungs are weak they cannot cough properly and a chest infection can quickly turn into pneumonia. Children with SMA type 2 also usually develop scoliosis (curvature of the spine) which can compromise the lungs even more, so lots of surgeries are done to fuse the spine into a straight position. With the correct medical care, chest care and management children with SMA type 2 can usually live well into adulthood.
SMA type 3 is the mildest form of child onset SMA and the effects of it vary from child to child. Children with SMA type 3 usually have difficulty walking up stairs, standing up from a sitting position and balance can be affected. It is important that children with this type of SMA do regular light exercise to try to maintain the muscle strength that they already have and it is important that they try to follow a healthy lifestyle. Life expectancy is normal.
Adult onset SMA ffects each person differently, depending on which muscles are affected such as the ones closest to the body (upper arms and thighs) or the ones furthest away from the body (lower legs, hands and feet). Adult SMA, like childrens SMA doesn't usually cause any pain, but they can sometimes feel like their muscles are heavy, tired, tingling and also cramp. Life expectancy is normal.
If the government could fund research into a cure or treatment for SMA then many young lives would be saved, babies with type one SMA are dying from this condition everyday, they are healthy, bright children trapped in a body that doesn't work. I myself have type 2 SMA and when i was diagnosed i wasn't expected to reach my teenage years and i am now 18 and doing well. Researchers have been looking into stem-cell treatment and they believe that this could be the answer we are waiting for, however most of this research is taking place in other countries and not as much here in the UK. If SMA was cured then a lot of other neuromuscular diseases would also be cured!
If you agree that the UK government should fund research into a cure or treatment for SMA then please sign the petition!
This petition is to hopefully get the government to fund research into finding a cure/treatment for the No.1 genetic killer of children under two, yes that's right the No.1 genetic killer of children under two!
Spinal Muscular Atrophy (SMA) is a neuromuscular condition which causes severe weakness of the muscles. There are many types of SMA including type 1, 2, 3 and adult onset SMA. Depending on which type of SMA a person has will determine how severely they are affected by it. The earlier a person is diagnosed with SMA the more severe there condition will be. Most people have not even heard of SMA yet it is the number 1 genetic killer of children under 2 years old! Just as shockingly, 1 in 40 people carry the gene which causes SMA and they dont even know about it!
SMA type 1 is the most severe type and is usually fatal. Babies born with type 1 SMA are usually diagnosed around 6 months old. These babies often start to show symptoms of SMA within a few weeks after being born and sometimes the mother may notice that during the last few weeks/days of pregnancy that the baby isn't as active and moves around less. SMA affects the voluntary muscles, which includes most of the body's muscles so a baby with SMA will not reach milestones which other babies the same age will be reaching, this includes: rolling over, crawling, sitting unsupported, holding up their head and moving their arms and legs. Babies with SMA are "floppy" and feel limp due to the weakness of their muscles. However, babies with SMA are not atall affected mentally and they are usually very bright and alert! As the SMA progresses, babies with SMA lose the ability to suck and it becomes dangerous for them to feed because they are likely to choke so they eventually need to be tube fed. They can also choke on their own saliva so they have to have suction which isn't very nice and each time they get a cold it is life threatening and they usually end up in hospital with pneumonia which is usually fatal for them because the weakness also affects there lungs, meaning that they find it hard to breathe and impossible to cough! The life expectancy of a baby with SMA type 1 is just one year old!
SMA type 2 affects each person differently and each person will be stronger or weaker than another. People with SMA type 2 are usually diagnosed at around the age of 18 months but this can vary. Children with this type of SMA don't usually start to show signs of the condition until they are around 12 months old. The parents may notice that the child is losing the ability to do some things which they used to be able to do. For example, a child with SMA type 2 may start to crawl, roll over and walk but then slowly they find these activities more and more difficult to do until they can no longer do them. All children with SMA type 2 will eventually use an electric wheelchair and will rely on their parents or carers to help them with daily activities such as dressing, toileting etc. Children with SMA type 2 can usually have a normal diet, however some children may need to be tube fed because the muscles used for swallowing may be affected. The respiratory muscles are also usually affected to some extent because the SMA makes them more prone to chest infections and because the lungs are weak they cannot cough properly and a chest infection can quickly turn into pneumonia. Children with SMA type 2 also usually develop scoliosis (curvature of the spine) which can compromise the lungs even more, so lots of surgeries are done to fuse the spine into a straight position. With the correct medical care, chest care and management children with SMA type 2 can usually live well into adulthood.
SMA type 3 is the mildest form of child onset SMA and the effects of it vary from child to child. Children with SMA type 3 usually have difficulty walking up stairs, standing up from a sitting position and balance can be affected. It is important that children with this type of SMA do regular light exercise to try to maintain the muscle strength that they already have and it is important that they try to follow a healthy lifestyle. Life expectancy is normal.
Adult onset SMA ffects each person differently, depending on which muscles are affected such as the ones closest to the body (upper arms and thighs) or the ones furthest away from the body (lower legs, hands and feet). Adult SMA, like childrens SMA doesn't usually cause any pain, but they can sometimes feel like their muscles are heavy, tired, tingling and also cramp. Life expectancy is normal.
If the government could fund research into a cure or treatment for SMA then many young lives would be saved, babies with type one SMA are dying from this condition everyday, they are healthy, bright children trapped in a body that doesn't work. I myself have type 2 SMA and when i was diagnosed i wasn't expected to reach my teenage years and i am now 18 and doing well. Researchers have been looking into stem-cell treatment and they believe that this could be the answer we are waiting for, however most of this research is taking place in other countries and not as much here in the UK. If SMA was cured then a lot of other neuromuscular diseases would also be cured!
If you agree that the UK government should fund research into a cure or treatment for SMA then please sign the petition!
Spinal Muscular Atrophy (SMA) is a neuromuscular condition which causes severe weakness of the muscles. There are many types of SMA including type 1, 2, 3 and adult onset SMA. Depending on which type of SMA a person has will determine how severely they are affected by it. The earlier a person is diagnosed with SMA the more severe there condition will be. Most people have not even heard of SMA yet it is the number 1 genetic killer of children under 2 years old! Just as shockingly, 1 in 40 people carry the gene which causes SMA and they dont even know about it!
SMA type 1 is the most severe type and is usually fatal. Babies born with type 1 SMA are usually diagnosed around 6 months old. These babies often start to show symptoms of SMA within a few weeks after being born and sometimes the mother may notice that during the last few weeks/days of pregnancy that the baby isn't as active and moves around less. SMA affects the voluntary muscles, which includes most of the body's muscles so a baby with SMA will not reach milestones which other babies the same age will be reaching, this includes: rolling over, crawling, sitting unsupported, holding up their head and moving their arms and legs. Babies with SMA are "floppy" and feel limp due to the weakness of their muscles. However, babies with SMA are not atall affected mentally and they are usually very bright and alert! As the SMA progresses, babies with SMA lose the ability to suck and it becomes dangerous for them to feed because they are likely to choke so they eventually need to be tube fed. They can also choke on their own saliva so they have to have suction which isn't very nice and each time they get a cold it is life threatening and they usually end up in hospital with pneumonia which is usually fatal for them because the weakness also affects there lungs, meaning that they find it hard to breathe and impossible to cough! The life expectancy of a baby with SMA type 1 is just one year old!
SMA type 2 affects each person differently and each person will be stronger or weaker than another. People with SMA type 2 are usually diagnosed at around the age of 18 months but this can vary. Children with this type of SMA don't usually start to show signs of the condition until they are around 12 months old. The parents may notice that the child is losing the ability to do some things which they used to be able to do. For example, a child with SMA type 2 may start to crawl, roll over and walk but then slowly they find these activities more and more difficult to do until they can no longer do them. All children with SMA type 2 will eventually use an electric wheelchair and will rely on their parents or carers to help them with daily activities such as dressing, toileting etc. Children with SMA type 2 can usually have a normal diet, however some children may need to be tube fed because the muscles used for swallowing may be affected. The respiratory muscles are also usually affected to some extent because the SMA makes them more prone to chest infections and because the lungs are weak they cannot cough properly and a chest infection can quickly turn into pneumonia. Children with SMA type 2 also usually develop scoliosis (curvature of the spine) which can compromise the lungs even more, so lots of surgeries are done to fuse the spine into a straight position. With the correct medical care, chest care and management children with SMA type 2 can usually live well into adulthood.
SMA type 3 is the mildest form of child onset SMA and the effects of it vary from child to child. Children with SMA type 3 usually have difficulty walking up stairs, standing up from a sitting position and balance can be affected. It is important that children with this type of SMA do regular light exercise to try to maintain the muscle strength that they already have and it is important that they try to follow a healthy lifestyle. Life expectancy is normal.
Adult onset SMA ffects each person differently, depending on which muscles are affected such as the ones closest to the body (upper arms and thighs) or the ones furthest away from the body (lower legs, hands and feet). Adult SMA, like childrens SMA doesn't usually cause any pain, but they can sometimes feel like their muscles are heavy, tired, tingling and also cramp. Life expectancy is normal.
If the government could fund research into a cure or treatment for SMA then many young lives would be saved, babies with type one SMA are dying from this condition everyday, they are healthy, bright children trapped in a body that doesn't work. I myself have type 2 SMA and when i was diagnosed i wasn't expected to reach my teenage years and i am now 18 and doing well. Researchers have been looking into stem-cell treatment and they believe that this could be the answer we are waiting for, however most of this research is taking place in other countries and not as much here in the UK. If SMA was cured then a lot of other neuromuscular diseases would also be cured!
If you agree that the UK government should fund research into a cure or treatment for SMA then please sign the petition!
We signed the "Cure S.M.A- get the government to fund research!" petition!
# 86:
11:38 pm PDT, Oct 27,
Eugeviniah Colley, Colorado
My grandson has this awful disease and all I want is to see him walk someday. If you knew anyone with SMA, you would feel the same way. HELP US HELP THEM!!! CURE SMA!!!!
My grandson has this awful disease and all I want is to see him walk someday. If you knew anyone with SMA, you would feel the same way. HELP US HELP THEM!!! CURE SMA!!!!
# 85:
3:27 am PDT, Sep 6,
Jose antonio Fortuny, Spain
how many lifes must die to find a cure? l have sma, and l want LIVE
how many lifes must die to find a cure? l have sma, and l want LIVE
# 84:
1:14 am PDT, Sep 6,
Daniela Esmella, Argentina
Tengo una pequeña princesita con sma tipo 1 de 4 años llamada Camila, ella es nuestra luz, nuestro angelito bello ... todos luchemos para que ni mi angelito ni ningun otro angelito sma apague el brillo de sus ojos... TODOS JUNTOS SOMOS MAS!!!!
Tengo una pequeña princesita con sma tipo 1 de 4 años llamada Camila, ella es nuestra luz, nuestro angelito bello ... todos luchemos para que ni mi angelito ni ningun otro angelito sma apague el brillo de sus ojos... TODOS JUNTOS SOMOS MAS!!!!
# 83:
3:56 pm PDT, Sep 5,
Kimberly Flores, Maryland
# 82:
2:36 pm PDT, Aug 27,
Cameca Anglin, Jamaica
# 81:
8:11 pm PDT, Aug 26,
Brian Quest, Jamaica
# 80:
2:51 pm PDT, Aug 26,
Peter Gibb, United Kingdom
Full support from me!
Full support from me!
# 79:
2:16 pm PDT, Aug 26,
Stacy-Ann Tanisha Frater, Jamaica
# 78:
12:57 pm PDT, Aug 26,
Shericka Brown, Jamaica
I have a friend who baby has it
I have a friend who baby has it
# 77:
8:47 am PDT, Aug 26,
Jennifer Calafiore, California
My 15 month old daughter was diagnosed with SMA type 1. There is much reseach taking place to cure SMA. With the proper funding SMA can be cured. I urge all lawmakers to support the research for the cure of this horroible disease.
My 15 month old daughter was diagnosed with SMA type 1. There is much reseach taking place to cure SMA. With the proper funding SMA can be cured. I urge all lawmakers to support the research for the cure of this horroible disease.
# 76:
7:44 am PDT, Aug 24,
Jill Pendegraft, Michigan
# 75:
4:31 am PDT, Aug 24,
Berni. Etheridge, United Kingdom
FOR ALL THE FAMILIES WHO HAVE LOST A CHILD OR HAVE A CHILD SUFFER ING WITH S.M.A
FOR ALL THE FAMILIES WHO HAVE LOST A CHILD OR HAVE A CHILD SUFFER ING WITH S.M.A
# 74:
6:06 pm PDT, Aug 23,
Dianna Fase, Michigan
# 73:
4:03 pm PDT, Aug 23,
Karie Williams, Arizona
If people are dying from this disease it deserves research dollars. Period. If we can spend billions and billions on a "cash for clunkers" program we as Americans, government included have to ask ourselves what our priorities are and protect the health of the nation.
If people are dying from this disease it deserves research dollars. Period. If we can spend billions and billions on a "cash for clunkers" program we as Americans, government included have to ask ourselves what our priorities are and protect the health of the nation.
# 72:
11:26 am PDT, Aug 23,
Vanessa Soldano, New York
# 71:
|
8:26 pm PDT, Aug 6,
Jenny Dooley, Australia
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# 70:
9:40 am PDT, Aug 5,
Carl Rosenstock, Wisconsin
# 69:
3:21 pm PDT, Jul 29,
Chante Harriotte, New York
# 68:
6:38 pm PDT, Jul 19,
Carrie Minz, California
A good friend of mines first bnorn was just diagnosed with this horrible disease SMA Type 1 after doing some research i am shocked and saddened that more has not been done. People must understand that this is a genetic disorder that can happen to any of us even if you have had healthy children if both parents are carriers you have a one in four chance. I cant imagine the feeling of being told your child is going to die and with all the advances in medicine they have not figured out a way to help these precious little babies. UGH Im just sick about it
A good friend of mines first bnorn was just diagnosed with this horrible disease SMA Type 1 after doing some research i am shocked and saddened that more has not been done. People must understand that this is a genetic disorder that can happen to any of us even if you have had healthy children if both parents are carriers you have a one in four chance. I cant imagine the feeling of being told your child is going to die and with all the advances in medicine they have not figured out a way to help these precious little babies. UGH Im just sick about it
# 67:
11:11 pm PDT, Jul 14,
Robert Odom, Alabama
# 66:
9:12 am PDT, Jul 3,
Name not displayed, Massachusetts
# 65:
10:50 am PDT, Jun 30,
Name not displayed, Ohio
# 64:
10:50 am PDT, Jun 30,
Name not displayed, Ohio
# 63:
2:13 pm PDT, Jun 27,
Camille Frater, Jamaica
# 62:
4:07 pm PDT, Jun 25,
Name not displayed, Arizona
# 61:
1:44 pm PDT, Jun 25,
Jessica Simonson, Arizona
# 60:
7:19 am PDT, Jun 25,
Mary Sutton, Ohio
# 59:
3:27 pm PDT, Jun 24,
Dana Rife, Ohio
# 58:
1:57 pm PDT, Jun 24,
Pam Claggett, Ohio
# 57:
7:39 am PDT, Jun 19,
ALPHA WI, Germany
# 56:
10:19 pm PDT, Jun 13,
Ari Kolman, Canada
# 55:
11:57 am PDT, Jun 10,
Susan MacLeod, United Kingdom
# 54:
12:05 am PDT, Jun 8,
ASIF H KHAN KHAN, California
I LOST ONE SON ALREADY AND THE 2ND ONE HAS SMA TOO IF ANY ONE CAN HELP US THAT WILL BE GREAT. I HEARD THERE IS SOMETHING GOING ON IN CHINA AND I WILL TRY TO TAKE HIM THERE IF THEY SAID ITS OK..........THANKS
I LOST ONE SON ALREADY AND THE 2ND ONE HAS SMA TOO IF ANY ONE CAN HELP US THAT WILL BE GREAT. I HEARD THERE IS SOMETHING GOING ON IN CHINA AND I WILL TRY TO TAKE HIM THERE IF THEY SAID ITS OK..........THANKS
# 53:
3:15 pm PDT, Jun 7,
Sheila Wagg, United Kingdom
# 52:
11:37 am PDT, Jun 6,
Jenn Whittleston, United Kingdom
this condition is nightmare to any family that gets involved and personal im involved as my baby lost his battle against sma type 1 in feb09 me and my familys life has never been the same since and never will be but this needs to end enough is enough too many have lost there lives to this. just because its rare doesnt mean the government can turn there back on it if this carries on it wont be rare for much longer. Rest in peace my darling TYLER i will always remember u. luv mummy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
this condition is nightmare to any family that gets involved and personal im involved as my baby lost his battle against sma type 1 in feb09 me and my familys life has never been the same since and never will be but this needs to end enough is enough too many have lost there lives to this. just because its rare doesnt mean the government can turn there back on it if this carries on it wont be rare for much longer. Rest in peace my darling TYLER i will always remember u. luv mummy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
# 51:
7:13 am PDT, Jun 6,
Michael Marriott, United Kingdom
the goverment needs to fund the cure for sma as it will prevent a lot of familys loss and pain knowing that there is a very small chance of spend a long time with there family,friends who suffer with this condition.my little boy had sma type 1 and was olny hours from turning 4 months old when he passed it makes my very angry knowing that the goverment could of helped years ago by funding the sma research in stead they rather fill there pockets with tax rebates on stupid things like pond house and emptying moats around there homes its clear to me that all they care about is there selfs and not familys that suffer in silence with there love ones seriously ill my boy was my live i feel like one fourth of my heart has been ripped out cause of sma and i now other perants feel the same so please let no more familys suffer with the pain my family has suffered i know my little boy is at rest and this wont bring him back but no one else should go through this so i hope that sma gets the 1000 signatures that it need. rest in peace my little boy love daddy.
the goverment needs to fund the cure for sma as it will prevent a lot of familys loss and pain knowing that there is a very small chance of spend a long time with there family,friends who suffer with this condition.my little boy had sma type 1 and was olny hours from turning 4 months old when he passed it makes my very angry knowing that the goverment could of helped years ago by funding the sma research in stead they rather fill there pockets with tax rebates on stupid things like pond house and emptying moats around there homes its clear to me that all they care about is there selfs and not familys that suffer in silence with there love ones seriously ill my boy was my live i feel like one fourth of my heart has been ripped out cause of sma and i now other perants feel the same so please let no more familys suffer with the pain my family has suffered i know my little boy is at rest and this wont bring him back but no one else should go through this so i hope that sma gets the 1000 signatures that it need. rest in peace my little boy love daddy.
