I agree....what a great set of parents! I wish I could help them. Is there a charity we can donate to, or some way to help?

The parents should remember that they were together before their child arrived and their relationship is the foundation of their family. It sounds like they have devoted themselves completely to their dying child when in reality they would be better off tending to their relationship with each other. The child will benefit more from this. If when she is older and more fully understands her parents relationship she may become guilt-ridden knowing her parents marriage may not survive her, for when she is gone the glue that holds her parents together will be gone as well. Another thing to consider is the possibility is that a cure or treatment may be found for her condition. The money from the sale of their home will not last forever, then what? This kind of financial problem can lead to a great deal of marital stress.

God Bless them all. My son has Down Syndrome and just had a brother and sister in his preschool class BOTH diagnosed with this disease.

for those of you that are not partents to a child with this dreadfull disease i as one would not expect you to complely understand please read about how mps/ sanfilippo syndrome affects these children i lost my son to this disease 2 an 1/2 years ago an i devoted my life an every waking minute to him the rest of my family grew to understand especially after he died at only 14 years old please read the follow which is from the national mps society site itself www.mpssociety.org
MPS and Related Diseases
Mucopolysaccharidoses (MPS) and related diseases are genetic lysosomal storage diseases (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.


What are the Major Characteristics of MPS and Related Diseases?
While the symptoms of the diseases may vary from one syndrome to another, there are many similarities. Affected individuals often have mental retardation, cloudy corneas, short stature, stiff joints, incontinence, speech and hearing impairment, chronic runny nose, hernia, heart disease, hyperactivity, depression, pain and a dramatically shortened life span.

Research is helping today's families
Although there is currently no cure for MPS, research is making great strides. Carrier detection, the development of replacement enzymes, and the possibility of gene therapy are among today's research themes and treatment options. Bone marrow and cord blood transplantation have been considered successful for many, though relatively few individuals qualify for this high-risk procedure. We've made major advancements in research thanks to the fundraising efforts of the Society and its members.
MPS III
MPS III is a mucopolysaccharide disease and is also known respectively as Sanfilippo syndrome. It takes its name from Dr. Sylvester Sanfilippo who was one of the doctors in the United States who described the condition in 1963.


What causes this disease?
mucopolysaccharides are long chains of sugar molecule used in the building of connective tissues in the body.
"saccharide" is a general term for a sugar molecule (think of saccharin)

"poly" means many

"muco" refers to the thick jelly-like consistency of the molecules

There is a continuous process in the body of replacing used materials and breaking them down for disposal. Children with MPS III are missing an enzyme which is essential in cutting up the used mucopolysaccharides called heparan sulfate. The incomplete broken down mucopolysaccharides remain stored in cells in the body causing progressive damage. Babies may show little sign of the disease, but as more and more cells become damaged, symptoms start to appear.

Are there different forms of this disease?
To date, four different enzyme deficiencies have been found to cause MPS III syndrome, and therefore the condition is described as type A, B, C, or D.

There is usually very little difference between the four types of the disease but there have been some very mild cases of the B form where the affected individuals have remained relatively healthy into adult life.

How common are these diseases?
The incidence of MPS III (all four types combined) is estimated to be 1 in 70,000 births. Type A is the most common one in Northwestern Europe, type B in Southeastern Europe, and types C and D are rare everywhere.
How is the disease inherited?
We all have genes inherited from our parents which control whether we are tall, short, fair, etc. Some genes we inherit are "recessive", that is to say we carry the gene but it does not have any affect on our development. MPS III is caused by a recessive gene. If the adult carrying the abnormal gene marries another carrier there will be a one in four chance with every pregnancy that the child will inherit the defective gene from each parent and will be affected with the disease. There is a two in three chance that unaffected brothers and sisters of MPS III patients will be carriers. They can be reassured; however, as the disease is so rare, the chance of marrying another carrier is very slight provided they do not marry a cousin or other close family member.


Is there a cure?
At present there is no cure for any of the mucopolysaccharide diseases. Various experimental methods have been used to try to replace the missing enzyme, but none so far have been of any significant long-term benefit. Bone marrow transplants have been tried on MPS III patients, but with disappointing results.



How does the disease progress?
The disease will affect children differently, and its progress will be much faster in some individuals than in others. Change will usually be very gradual, and therefore, easier to adjust to. The disease tends to have three main stages.

The child's pre-school years may be a very frustrating stage for the parents. They begin to worry as their child starts to lag behind their friends' children in development, and they may feel they are being blamed for the child's overactive and difficult behavior.

The diagnosis is often made very late as some children do not look abnormal, and their symptoms are among the most common seen in all children. The doctor has to be perceptive enough to recognize that something serious is wrong and ask for urine and blood tests to help reach a diagnosis. It is not unusual for families to have one or more affected children before the diagnosis is established. The second phase of the disease is characterized by extremely active, restless and often very difficult behavior. Some children sleep very little at night. Many will be into everything. Many like to chew; hands, clothes or anything they can get hold of.



Sadly, language and understanding will gradually be lost and parents may find it hard not being able to have a conversation with their child. Many will find other ways of communicating. Some children never become toilet trained, and those who do will eventually lose the ability.

In the third phase of the disease children with MPS III syndrome begin to slow down. They become unsteady on their feet, tending to fall frequently as they walk or run. Eventually they lose the ability to walk. Life may be more peaceful in some ways, but parents will need help with the physically tiring task of caring for an immobile child or teenager.

may god bless this child, and give the family strength and willpower to be able to handle something so difficult! God Bless Them all....

To Anthony (who thinks he can comment on how 'wrong' the parents are): Excuse me, but how these parents CHOOSE to devote the rest of the time their child has here to making each day special and noteworthy...is entirely their business! MYOB with your pseudo-intellectual analysis...and be grateful there still exist some who choose to put their child first. My mother was abusive and would have cared less. You wonder how their marriage will survive? I fully expect two people who clearly have their priorities in order as to giving such a sorely afflicted child the best care and happiness possible, will do just fine..especially since they are enjoying themselves with these vacations and activities as well..and will have so many lovely memories if and when the time comes when they lose their child. No doubt they've thought through the consequences and will be able to work hard to recoup any financial losses later. How dare you judge them! Their house and belongings are only 'things'..tangibles. Their love for their child is intangible and they will never have to look back with regret for not 'doing more'. Kudos to them.

I Agree with Allison. disgustingly tacky and insensitive

Sorry to hear about you losing your daughter to Leukemia, Alison. If you are interested, Team in Training is a great program to help raise money to fight blood cancers. I'm on my third event - I did the Disney Marathon in January, the Tri-Miami Olympic Distance triathlon in May, and now I'm training for a Century Ride - a 100 mile bike ride - that is happening in October. I couldn't run around the block when I started last August. It has truly changed my life.

The group is taking registrants for the upcoming season (January 2009). I'm sure someone like yourself who has been touched so personally would be most welcome. If you are interested, visit http://www.teamintraining.org/ for more information. My personal TNT webpage is below.

Paula
http://pages.teamintraining.org/sfl/waterway08/pphillips

I also lost a daughter 27yrs ago and it still hurts you are doing the right thing god bless you all keep the faith it will get you thru it all
good luck Rose

Alison, I agree - this is such tacky placement for that particular ad. AOL has become so hard up they let nothing stand in the way of an ad or any paid product placement. I think they must be hiring elementary school students to keep costs down.

It's interesting watching AOL slowly go down the drain, and this type of thoughtless ad placement doesn't help them one bit. I'm very sorry that you lost your child, and that you had to be subjected to such bad judgement with this ad placement.

HELLO??? The advertisments are set to the stories by "key words". so if you have a sroty about the elderly, you get ads for depends. AOL wasn't being insensitive, the computer paird the ad based on words in the story. People need to quit reading into things and find out their facts before whining.

I am so sorry for your loss. I agree with you AOL made an article about a dying child very tacky. This is disgusting.

The ads I did not even notice. If they upset you some much vote with your pocket book and choose another IP. If all the complainers did this eventually AOL will get the message. Decreased sales.

Sorry to hear about your daughter. I have a daughter too, and she is worth the world. I would do anything to make her happy, but I didn't even notice the "ad" - but I guess you mean the list of 10 places to take your child before they grow up? I don't put much stock in other people's lists or ideas of where to go, and having looked at it now I haven't been to most of them myself, and I'm old! Disneyland once in the fifties, and one banzai trip across the states back to New York with all of us in the back of a station wagon when I was nine - I saw the Statue of Liberty from the Long Island Expressway on the way to my uncle's home. Time with family is the most important thing, and it doesn't matter where you go, or if you just stay close to home. Bless you, I'm sure your daughter was loved and happy just being with you.

Dearest Alison,

My heart goes out to you and this family. My sister's son passed away at age 16 a year ago tomorrow. Do not know how we will get through the day. How any parent copes with a sick child or a child dying is their choice. No one should ever judge them.

I will continue to pray for you and this family.

Bless you.

Donna