Welcome,

It’s been a great but stressful few weeks. Our MPS community lost another precious soul. Andrew Jump has left this earthly life and free of the pain and suffering of MPS. No less his parents and family and friends will be missing him with all their heart. There’s no easy way with this life. You pray for no more suffering, yet we don’t want to lose our babies/ young children to this disease. It’s so important to fund research for these diseases, and to provide support and help for families while enduring the different stages of this disease. The older Jesse gets the harder it is to get support and help. No one wants to help care for a child that is 14 years old and 120 lbs wearing diapers with the cognitive functional ability of about 1 – 2 years for the most part. Sometime I wonder if Jack and I will ever get to go anywhere together and do things together again before Jesse dies. God it hurts to even think about that, but right now we live two very separated lives even though we’re under the same roof. One of us always stays home to take care Jesse while we takes turns going to family functions, such as weddings, funerals, special invite events of many kinds, but they are places we cannot take Jesse. I get very emotional not being on these dates with my husband. Something needs to change, because we are growing further apart. Please pray that things change soon. MPS has a wicked way of doing this to families.

On another note, Jesse graduated 8th grade on Friday June 5th and will be going to high school next year. We have no idea which one yet. The sad news is that just 2 ½ days before that, Jesse spiked a fever in the wee hours and had a pretty good seizure. It was totally different than any he has had in the past. He was crying in his room, so I went in. He felt like he was shivering. So I cuddled him and talked to him while he was still crying, then I could feel the shivering turn more ridgid as he continued to cry off and on. It was definitely a seizure. He stayed conscious for this whole seizure. It was breaking my heart, because we know he knew what was going on. It had to be horrible for him. Anyway, this one took a pretty good whack at him. He has not been able swallow even pureed food at all without crying and fussing. He wants to eat and drink so bad, but then cries. We almost did not go to his graduation, but I decided even though he was not truly up to it, and I would be an emotional wreck, due to seeing the other kids dong well and my boy being there like a Zombie after this seizure. I knew it would break my heart. This is not the way I wanted to remember his 8th grade graduation. He has been doing so well and then 2 days before, MPS and seizures had to steal the joy of his special day!! I HATE SEIZURES, AND I HATE MPS!!! So here are the pictures and short videos I did. Not what I wanted to post, but at least we have some memory. I guess it’s better than none.

For the graduation ceremony itself, Mary Pat Clark, of the City Council was our guest speaker. She did a fabulous job. They made the graduation more like a night at the “Ocsars”. They gave out “Oscar Awards” and our kids walked the “Red Carpet” to get their certificates. There are two videos one of announcing about Jesse and what his Oscar was for. Then another of him walking the “red carpet” to get his certificate and carnations. Enjoy!!

Jesse’s grand entrance:



The "Oscar Speech" about Jesse:



Jesse walks the “Red Carpet”



Just another note of interest.. if anyone wants to donate airfare, or hotel cost for the Disney MPS conference in December this year, please let know. We didn’t get any scholarship funds this year from the MPS Society. They had lots of new families who have never been to a conference before that they funded this year with the scholarships. With the economy so bad, we most likely won’t be attending unless we get lots of help from anyone who can afford to help.






That's about it for now. Thanks for your prayers, and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your good friends. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.



There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!




Many photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos