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T-R PHOTO BY LANA BRADSTREAM
\nLandi Hodson is living with a rare genetic condition known as nonketotic hyperglycinemia, or NKH. This has been a big year for her as she completed third grade and Mayor Joel Greer proclaimed May 2 as Non-Ketotic Hyperglycinemia Awareness Day.<\/p>\n
Landi Hodson faces insurmountable odds and has already overcome many challenges. Having been diagnosed with nonketotic hyperglycinemia (NKH), she was not expected to live as long as she has, as many people with the condition do not live beyond the age of eight. <\/p>\n
NKH is a rare genetic, metabolic disorder which occurs when the body does not properly break down an amino acid called glycine. This results in an excess amount of glycine in the body and the brain, causing neurological issues.<\/p>\n
Most of the time, NKH is diagnosed within the first week of life as the infant displays symptoms such as seizures, low muscle tone, fatigue and apnea. Her parents, Maureen Gummert and Shawn Hodson \u2014 who call themselves Landi\u2019s \u201cGrandmas\u201d \u2014 said for someone to have NKH, both biological parents have to be carriers.<\/p>\n
\u201cLandi is more moderately affected,\u201d Gummert said. \u201cThe kids who are severe, most don\u2019t make it out of neonatal. Some 90 percent are tube fed. She\u2019s never had a tube. Most are immobile and nonverbal, can\u2019t move at all.\u201d <\/p>\n
Due to the neurological impact, Gummert said many people with NKH lie motionless and develop a respiratory illness which tends to be fatal. The disorder only affects one in 76,000 births throughout the world. There have not been a large number of people with NKH in Iowa, and Landi, 10, is the only child left with the disorder in the state.<\/p>\n
\u201cThe only other child in Iowa [with NKH] passed away in Iowa a year ago,\u201d Gummert said. \u201cThey were about the same age. He was eight or nine months older than Landi.\u201d<\/p>\n
Slowly, more knowledge of NKH is spreading. Mayor Joel Greer proclaimed May 2 as NKH Awareness Day, in conjunction with NKH Crusaders Worldwide Awareness Day. People at Landi\u2019s school, Fisher Elementary, also wore yellow and black for the NKH international mascot \u2013 the bumblebee. <\/p>\n
\u201cAerodynamically, for what the bumblebee is, it shouldn\u2019t be able to fly, but it does,\u201d Gummert said. \u201cThat\u2019s the premise behind why it was chosen [as the mascot.]\u201d<\/p>\n
Day-to-day<\/p>\n
Hodson and Gummert adopted Landi in 2018, but she has been with them since birth. Landi was diagnosed with NKH at 10 weeks of age. Hodson noticed when Landi came home from the hospital that her daughter would lay there and shake. <\/p>\n
\u201cI had never seen any other baby do that, so we knew there was something wrong right away,\u201d she said. <\/p>\n
Landi\u2019s neurologist in Des Moines was the physician who diagnosed her, by administering a spinal tap and obtaining some cerebral spinal fluid to check for deficient enzyme activity which causes excess glycine. <\/p>\n
Landi is not verbal, but Gummert believes she understands some words such as \u201cGrandma,\u201d \u201cmilk\u201d and \u201cbath.\u201d<\/p>\n
\u201cWe can tell by the noises she makes as to what she wants or what\u2019s wrong,\u201d Hodson said. \u201cIf she\u2019s crying and she\u2019s throwing a fit, there\u2019s no tears. If she is crying and there\u2019s tears, we know she\u2019s hungry or there\u2019s some sort of distress.\u201d<\/p>\n
She said Landi can cough, sit and move her limbs, but cannot stand or crawl. According to Hodson, Landi can move around on the floor by rolling or scooting. In fact, despite physical restrictions, Hodson said Landi is always moving.<\/p>\n
\u201cShe never sits still unless she\u2019s sleeping,\u201d she said. <\/p>\n
Landi\u2019s condition has created a structured lifestyle with numerous medications. She awakes everyday between 5 and 6 a.m. so her parents can get her daily medications ready. According to Hodson, they have to prepare 11 syringes of different medications throughout the day. <\/p>\n
\u201cShe gets her first four at 6 a.m.,\u201d she said. \u201cShe also has a bottle because she still drinks formula. It has the vitamins and everything she needs. She drinks 7 ounces of milk with her meds and goes back to sleep.\u201d<\/p>\n
When it is not summer, Gummert and Hodson wake Landi again at 7:45 a.m. to get ready for school at Fisher Elementary. Hodson said they give her more medication at that time and Landi will take a \u201ccat nap\u201d or watch TV until the bus arrives at 9 a.m. and she gets another medication. <\/p>\n
At lunch, Landi gets two more doses of medication.<\/p>\n
\u201cShe eats a lot of pureed food, but she can also eat soft adult food like mashed potatoes, yogurt and cheese,\u201d Hodson said. \u201cShe\u2019s starting to eat meat now if it\u2019s cut into little tiny pieces. She likes cookies and sweet stuff.\u201d<\/p>\n
At 2 p.m., there is another dose of medication, and two more at 3:30 p.m. with a bottle of milk. Landi will then sleep until supper time at 5 p.m., take more medications between 7 p.m. to 8 p.m. before she has another bottle and gets ready for bed.<\/p>\n
Unfortunately, seizures are a daily part of Landi\u2019s life, and Gummert said they always occur at night while she is sleeping. <\/p>\n
\u201cAt about 10:30 every night, she has a seizure,\u201d she said. \u201cIt\u2019s not a grand mal. She wakes up and is somewhat alert. She knows it\u2019s happening and it\u2019s frightening for her. She does take CBD and THC which has helped with the severity and the amount.\u201d<\/p>\n
The regularity of the seizures cannot be explained. Gummert said the neurologist believes there is some kind of disconnection going on during her sleep cycle. It is also theorized Landi could be reacting to a difference in sound, as Hodson and Gummert turn the television off to go to bed at that time.<\/p>\n
Hodson added that Landi will go back to sleep after seizures are over. <\/p>\n
Despite the large number of medications, the schedule and the frightening seizures, Landi enjoys a variety of things. While in school, she would go swimming at the YMCA twice a month, and Gummert said Landi loved that. The family goes camping every weekend, which Landi also enjoys because she gets to ride in a boat. She also likes to spend time with her cousin. <\/p>\n
Hodson said Landi has some traits of autism, as she does not like to be held or snuggled. <\/p>\n
\u201cShe likes to be in the room with us, but she doesn\u2019t want to be loved on unless it\u2019s her cousin,\u201d she said. <\/p>\n
Going for walks in her wheelchair is also something that pleases Landi. When she\u2019s inside, Landi likes to have the television on, and enjoys \u201cMolly of Denali,\u201d \u201cArthur\u201d and \u201cCurious George.\u201d<\/p>\n
\u201cShe doesn\u2019t watch anything other than PBS Kids,\u201d Gummert said. <\/p>\n
Trial and error<\/p>\n
Due to the rarity of the condition, Hodson said doctors do not know much about it. Gummert added all of the research money is raised by families of people living with NKH. There is not really a determined course of medication or action when it comes to treatment. Gummert said most of it is trial and error. <\/p>\n
For example, Landi takes a preservative called sodium benzoate, which adheres to the glycine and helps Landi\u2019s body expel it. Then there is dextromethorphan, which is a cough suppressant.<\/p>\n
\u201cA doctor did a study on it and it protects the blood-brain barrier and keeps the glycine from reaching the brain, which helps with the brain damage,\u201d Gummert said. \u201cThere is so little known.\u201d<\/p>\n
The lack of knowledge has also created a network amongst NKH parents. Gummert will communicate with parents and they will share different treatments which have helped. <\/p>\n
\u201cMaureen will learn something from a group of parents online, and take it to the doctor and say this is what other parents noticed,\u201d Hodson said. \u201cWe definitely know more about it than the doctors.\u201d<\/p>\n
Fortunately, Gummert said Landi\u2019s neurologist is open to trying the suggestions. <\/p>\n
\u201cTo me, feeding a kid cough medicine four times a day is outlandish,\u201d Gummert said. \u201cIf they said an aspirin a day did something, he would be willing to try it. He would write the script and help us make it happen. That is helpful because some parents don\u2019t have receptive neurologists.\u201d<\/p>\n
Thankfully, she said Landi gets Medicaid, but it is a consistent battle. Gummert has had to communicate with the state\u2019s Congressional delegation to get Medicaid to cover the trial-and-error treatments. She said it would be approved for six months, but Landi will need it forever.<\/p>\n
\u201cSo we just pay for it because it\u2019s too much of a fight,\u201d Gummert said. \u201cI know that\u2019s what insurance companies are counting on \u2014 families giving up. I\u2019ve fought pretty hard for things. Initially they wouldn\u2019t give her a case manager because she wasn\u2019t sick enough.\u201d<\/p>\n
That determination was made because Landi was not in the hospital, but her parents kept her well enough to prevent hospitalizations. In fact, the last time Landi was hospitalized was 2016, which is not typical of NKH children. <\/p>\n
\u201cShe\u2019s generally healthy, aside from the NKH,\u201d Gummert said. <\/p>\n
\u2014\u2014-<\/p>\n
Contact Lana Bradstream at 641-753-6611 ext. 210 or lbradstream@timesrepublican.com.<\/p>\n","protected":false},"excerpt":{"rendered":"T-R PHOTO BY LANA BRADSTREAM Landi Hodson is living with a rare genetic condition known as nonketotic hyperglycinemia,…\n","protected":false},"author":2,"featured_media":3581,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[50],"tags":[4172,200,79,4171],"class_list":{"0":"post-3580","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-genetics","8":"tag-beating-the-odds-marshalltown-girl-lives-with-rare-genetic-disorder-known-as-nkh","9":"tag-genetics","10":"tag-science","11":"tag-todays-news"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/3580","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/comments?post=3580"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/3580\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media\/3581"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media?parent=3580"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/categories?post=3580"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/tags?post=3580"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}