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Daniel Schmidt is a 13 year old boy from Woodburn, Oregon. He lives with his parents, Greg and Sharon and his two younger brothers, Mark (11) and Luke (8).

In the beginning ...

By just about any standard, Daniel had a pretty rough entry into this world. Born via emergency C-section 9 weeks premature, he was only 3lbs 4oz at birth. He was intubated for 18 hours before he was able to breath on his own. The first heel prick done at the time of birth did not show that Daniel had galactosemia due to the fact that he had to have a blood transfusion at birth. He also had apnea and bradycardia. He was given five to ten milliliters of breast milk two days after birth by gavaging (tube down the throat). He started vomiting and having diarrhea. His weight slipped down to 2lbs 15oz. The doctor put him on Isomil three days after birth and Daniel started gaining weight. The doctor decided to re-do the heel-prick newborn screening because he had heard of this very rare metabolic disorder called galactosemia and he had never had a baby in his care that had it, but he was concerned. Daniel was also put under the billiruben lights because his billiruben level was 11.

Daniel was formally diagnosed with classic galactosemia at 3 weeks of age and was then put on Nutramigen formula. Dr. Neil Buist came to the hospital and gave the Schmidts a little talk on galactosemia and what they might expect for Daniel during his life. Daniel went home with his family at one month after birth. Daniel's eyes were checked about 5 days after he was sent home. The doctor said he had a vitreous-retinal infection in both eyes. In the right eye, the macula was damaged and in the left eye, the vitreous was totally cloudy. Greg and Sharon were told that Daniel was blind. After four months, the hemorrhages stopped and he began to have some vision.

the early years ...

Daniel had some difficulties with major motor skills as a baby and toddler. He had to have physical therapy to learn to turn over, crawl, sit-up etc. He was hypertonic up until he was about 10 months old. He didn't walk on his own until he was 14 months. He was not a good runner, but some of that was due to his vision. The Schmidts tape recorded his babbling as a baby per instructions from Dr. Nelson (speaker at the October 1999 PGC conference). Daniel was assessed as having very normal speech development, with articulation errors on r's, l's both at the middle and end of words.

Daniel also experienced some fine motor skill problems which Greg and Sharon first noticed in the way he ate finger foods and in the way he held crayons and pencils. He also had trouble playing with play-dough. Daniel was formally diagnosed by a physical therapist when he was about 1 year old. He had some therapy and overcame most of the difficulty.

Despite these difficulties, Greg and Sharon were undeterred in their desire to raise Daniel with the full range of experiences available to children his age. Daniel went to preschool and had a wonderful time. Sharon educated everyone who would be dealing with Daniel, regarding food issues. She always prepared a list of foods that were "safe". If there was a birthday celebration and the teachers knew ahead of time that there would be special food or cake, Sharon provided a "safe" treat. Sometimes Daniel's classmates wanted what Daniel had instead of what they got at the party. In the event of a dilemma where treats were to be served but the Schmidts had not been notified (and the teachers had no safe foods on hand) the Schmidts chose to let Daniel have just a very small portion of what was served (but not ice cream).

As Daniel got older, he was always able to declare for himself "what was OK, and what wasn't". He was very good at letting people know that he couldn't have "this or that". The Schmidts started talking with Daniel very early about his galactosemia, and he heard his parents telling other people about it, so it was very natural for him. He didn't know any other way of eating or what he was 'missing' since he never tried cheese, milk, etc. He would have Mocha Mix "ice cream" and Rice Dream products for cold treats along with Popsicles. Daniel's dietary management has resulted in low Gal-1-P levels that continue to this day.

school days ...

All through his school years, Daniel has demonstrated very normal academic abilities. He has been in speech therapy since kindergarten due to the articulation difficulties, but no sign of dyspraxia. He has earned average to above-average grades, and has even shown further improvement each year. Daniel loves history and science and only struggles a little with math. As for any residual fine motor difficulties, he does have trouble with handwriting, but in the past year Daniel has made a great improvement. He loves to read and is in the highest reading group at his school. He just finished the 4th Harry Potter novel in 3 weeks. While he is still undecided, Daniel thinks he might like to be a teacher when he grows up.

Daniel is still considered legally blind. With correction his vision is at 20/80 in one eye & 20/100 in the other. His parents have always met with Daniel's teachers at the beginning of each school year to alert them and plan to accomodate his 'spatial' issues. He needs to be on the right side of the class and needs some adaptations for certain subjects. For example, they tell the teachers that he needs a hard copy of whatever they are trying to teach on the board, especially if he is to copy notes or math problems. If it is something that is impromptu, then he gets to have a copy of one of the other students notes. He does pretty well on his own, and never makes a 'big deal' of his vision impairment. He'll just remind the teacher or ask for an enlarged copy of what he might need. Maps continue to be a problem, but he uses a magnifier for some of those needs.

Daniel uses a lap top computer at school that is provided by the school. The Schmidts requested that Daniel be computer literate by high school in order to properly prepare him for the amount of writing and note taking expected of students. Further insuring maximum development of Daniel's academic potential, Greg and Sharon put a requirement for computer literacy on his IEP in the third grade. Daniel was first given a desktop computer to use in the classroom from third to fifth grade. It was designated as "his" computer. All the kids thought that it was cool, and he got to choose a computer buddy each week to share it with. When Daniel was transitioning to Middle School, the Schmidts felt that a lap top computer would better suit his needs and so the district found a way to get one for Daniel. He keeps it and uses it at home and at school. Sharon describes it as 'a godsend'. For example, Daniel has spelling difficulties and the computer's spell checker helps.

a normal life ...

Daniel is 5' tall and weighs about 110lbs. Compared to most of the boys at his school he is fairly small. His teeth are very healthy. Daniel was 7th grade class president, secretary of the Builder's Club (a Kiwanis organization for youth), Patrol Leader in his scout troop, and on the leadership team for his church youth group in the past year. For eighth grade, he will be Assistant Senior Patrol Leader in Scouts, and Vice-president of the Builder's club. He is active on the track team and loves to swim. Daniel has many friends and his teachers all think he's great! In a major milestone for any teenager, Daniel recently completed his first trip away from his parents on a week-long Boy Scout leadership training campout. Sharon expressed complete trust that he would make good choices.

Daniel's favorite meal is homemade tacos! The Schmidts have a tortillaria close by that makes wonderful corn tortillas with no lactose products. Sharon fries them up and Daniel adds all the fixin's (except cheese, of course). He downs about 6 or 7 each meal. He loves candy too! Like many kids his age, Daniel has braces right now so his food selection has been cut even more drastically!

Sharon indicates that Daniel is doing so well that they really don't think about galactosemia that much anymore. In fact, that is the message she wants to pass on to other parents; that life can get back to 'normal' again.

From the sound of Daniel's story, life is not only normal, but wonderful and full of blessings. He's a great kid with a great family.

Daniel’s mom, Sharon writes …

Well, I guess we left off when Daniel finished 8th grade.

Daniel attended the National Jamboree in Washington D.C. in August of 2001. He camped and traveled with a group of about 8 Boy Scouts from our area. He was able to eat pretty much what he wanted during the trip. They even had a McDonald's within the compound. They ate in restaurants during their tour of Washington D.C. and we felt that he knew his diet well enough that he could monitor himself just fine. He had a great trip, he was able to complete some merit badges and trade patches, along with all the traditional activities that a National Jamboree has to offer.

Daniel started 9th grade in all Honors classes at Woodburn High School (WHS) at the end of August. He wanted to be active in school so he joined a few clubs and also decided to try out for the Water polo team (1st year at our High School). He made the team and had fun making new friends and playing different schools. He also continued to swim for the WHS swim team through the Winter. He lettered in both sports!

He maintained a 3.5 grade point average during his freshman year. During the summer between 9th and 10th grade Daniel stayed active in the BSA, attending Summer Camp, Leadership training and was active with our Church youth group. Daniel is now finishing up his sophomore year at WHS. He played water polo again this past fall, and has been attending confirmation classes at church. He always has tons of homework (about 2-3 hours per night) but he is very self-motivated. Daniel is challenging himself to follow an IB program at WHS in the areas of History and language arts. He has improved is GPA to approx. 3.75.

He is enjoying the High School experience and continues to be an outgoing young man. Daniel is working on deciding what his "Eagle Project" will be during Spring break this year. He hopes to finish it up by the fall of 2003 and receive his Eagle before the end of this year. We are very proud of our son and the man that he is becoming. He has overcome any obstacles put in his way!!

Sharon would be happy to hear from other parents who might have questions about Daniel's story. Contact Sharon via e-mail at schmidt-5@worldnet.att.net.

PGC extends its most heartfelt thanks and warmest appreciation to Daniel and his family for sharing his story.