Marvin’s Battle with Rare Disease

Updated: Information

I am raising money for my sister Samantha Lampert and her husband Zachary Lampert Youngest son Marvin to help them with costs of medical expenses, travel expenses, care, medical supplies insurance doesn’t cover and other expenses that might arise with Marvins doctors discovering he has A relatively rare autosomal recessive immune deficiency known as myeloperoxidase deficiency syndrome. Marvin has been hospitalized several times since he was born starting from when he was six weeks old , each time doctors struggling to find answers to what was causing fever, pain, rashes, vomiting, bloating, mouth sores and swelling of his hand and feet, inflammation of his intestines and sores on his bottom. He also has issues with tolerating feeds and keeping food down, he has been on a ng tube and nj tube and has been hospitalized after nj tube removal to stretch a portion of his gi tract to help him digest food better. Over the month of November Marvin has had webbing removed from the lower portion of his stomach and surgery on his pylorus (the opening to the intestines) and then back into the the hospital for c-diff a bacterial infection and a viral infection with it causing him to be very ill. Marvin had a gtube placed Friday morning to help keep him hydrated and receiving nutrition due to his symptoms and flare ups along with his respond to viruses and infections making him so ill. He is finally hope and resting with new adjustments and several upcoming appointments. 

An update on Marvin and his health in 2023. Over the last year, the g-tube has help us manage his flare-ups at home much more than possible. He has only had to stay in the hospital one time since having his g-tube placed and was there for four days due to a Strep infection which made him really sick and need broad range antibiotics. Him having the g-tube hasn't decreased the amount of instances in which he experiences symptoms and illnesses but it has made them easier to manage at home and keep him out of the hospital away from other germs. We are still waiting to get more answers from the genetic doctors , we know that some of his symptoms are just part of his genetic makeup and something that he will deal with for the rest of his life.

Marvin has been through several tests including testing for meningitis twice which include spine taps and full courses of broad range antibiotics, finally in his most recent hospitalization they discovered he has a rare genetic condition known as Sucrase Isomaltese Deficiency and last month through his GI provider its been discovered that Marvin also has “MPO” which they originally though was Chronic Granulomatous Disease as they can cause similar symptoms and problems. 

Marvin is 2 years old and loves to play with his older siblings, dance and snuggle and even when he doesn't feel good he always finds his moments to smile. We want to make sure he keeps getting to smile and hope to work towards the answers and treatment for him to not have frequent pain and discomfort so that he can smile more!

 

myeloperoxidase deficiency syndrome is relatively rare autosomal recessive immune deficiency in which phagocytic cells make inadequate quantities of myeloperoxidase (MPO). People born with deficient MPO may have an increased incidence of infectious diseases relative to the general population. with this condition, Marvin is missing an enzyme within the white blood cells which means the white blood cells (the fighting cells) cannot fight germs properly. With this disease Marvin is at risk of developing life-threatening illnesses from things others come into contact every day without even thinking about it. With MPO deficiency syndrome it can be maintained with proper medical interventions such as medications to treat infections as they arise and to boost his immune system by taking necessary precautions. Our family is asking for help to get Marvin the necessary care and to help with expenses that might arise on this new journey when it comes maintaining and receiving care for not just one rare condition but now two and the genetics team doesn’t believe his conditions explain what causes Marvins flare ups . Marvin needs to be seen by a specialist someone who has experience with rare conditions is willing to help Marvin maintain a healthy life with these conditions. We appreciate any help for Marvin to be able to receive the best treatment and care possible! Thank you for taking the time to read this and help my nephew.