Matthew F.
Born: August 24, 2004
Illness: Primary Immune Deficiency, Brain Tumor, Variant Form of CF,
Arthrits, Diabetes, Anemia, JRA
Quilt Deadline: June 1, 2009
Theme of Quilt: Quilt is now full and closed.  Please check the other children for stitching information.

The following interests are mainly to help you get to know the child better.
You may use what you can towards the theme of the quilt, but make sure that you stitch within the theme. 

Matthew's interests are: He loves fish and fishing, Sharks, Dolphins, boats, Deigo, Thomas the Train, legos, spiderman.  Matthew lives in MN.

Click here to see the squares for Matthew as they come in for him!  (Please keep in mind that his quilt wasn't opened to stitchers until January 2009)
Biography

I was orginally diagnosed January 2006 at 15 months of age with a PID: primary immune deficiency called hypogammaglobulinemia with specific antibody deficiency. As a baby, I was sick a lot with ear and sinus infections. I was constantly congested and could not breathe through my nose. I would bang my head and put things in my ears (like pencils). I kept my parents up at night crying because my head hurt from a severe sinus infection called pansinusitis which no one knew I had.

My Mom kept bringing me to the doctor and I would take all of my medicine but, I never got better. My Mom was beginning to think she was going nuts. Finally, at 15 months they did a sinus CT which showed this severe sinus infection even though I was on antibiotics and finished many courses of them prior. It was one of the worse CT scan they have seen.

I saw an ID (infectious disease)/immunology doctor. She checked labs for my immune system and there was some problems with my B cells. She said I would need IVIG (IV-immunoglobins) every 3 weeks and sometimes sooner maybe for the rest of my life. I have had over 6 sinus surgeries and 4 ear tube surgeries last being permanent ear tubes to help promote better drainage to help fight the infections. I needed 4 continuous months of daily IV antibiotics and antifungal meds to treat that 1st severe pansinusitis and have had repeated episodes of this several times a year.

I have been in and out of the hospital every month or so with various infections and problems. I had a port-a-cath because I needed IV medicine, labs, and IVIG so often but recently had it removed because I was septic twice within months with my own gut bacteria. We are still waiting for another port replacement. I went out to Cincinnati Children's Hospital for a 2nd opinion for diagnosis and treatment options for my immune problems. They suggested weekly SQIG infusions which I tried for 7months. Then I went back to the IVIG infusion every 3 weeks because I still had bad side effects that needed steroids etc... which my immunologist did not want me on. Steroids can depress your immune systems and my is already depressed.

I will go back out to Cincinnati again soon for bacteriophage testing once it is FDA approved. This will evaluate more for CVID (common variable immune deficiency). This is a little more involved than the previous diagnosis. I also have been diagnosed with rheumatological arthritis (RA). I have to take daily medications and do daily range of motion several times a day for the joint pain and stiffness along with getting some steroid injections into my joints here and there. I also have high blood sugars which are monitor and corrected daily; anemia which led to pica (ate kleenex, toilet paper, markertips, etc..) to which I have received IV iron for but right now I am taking repliva (oral supplementations) by mouth.

I also have lots of GI problems. I have problems with abdominal distention, diarrhea, overgrowth of bacteria and fungus and/or yeast in my gut, chronic vomiting, clay colored pale stool and recurrent ileus. My weight and height are slowly falling off of the chart as time goes on. In the spring '07 found out I possibly have a variant form of CF (Variation 5'UTR-142C>A in the promoter region of the CFTR gene) to which I take pancreatic enzymes, vitamins, do daily vest therapies and neb treatments for.

I have a chest deformity called pectus excavatum that makes my breathing issues worse. At the end of the summer in '07, I learned that I have worsening T cell problems (particularly the helper T cells) that may be causing my autoimmune problems. In the Fall 2007, I learned I had NK cell problems. NK cells are part of the immune system too - ahhh. It was suggested this might cause my GI symptoms. So, now they are saying I probably have a combined immune deficiency. This past July 08, I went out to the Childrens Hospital of Wisconsin for a 2nd opinion for my GI problems and genetic workup. They think I may have SDS (Shwachman Diamond Syndrome). It involves the bone marrow, pancrease and may lead to aplastic anemia or leukemia.

I also saw a neurologist this July 2008. I have intermittent problems where I can not see out of my right eye, will get a headache, have trouble walking, vomit and sleep afterwards. She ordered an MRI to rule out migraines. The MRI in Aug '08 showed a brain tumor in my cerebellum blocking my 4th ventricle.  It was removed on Oct 9th and sent out for pathology. We found out the tumor was a benign tumor called choroid plexus papilloma. The surgery led to adrenal insufficiency and ongoing problems with adrenal crises. I take daily cortisol replacement and sometimes get a shot called solu-cortef when my body is stressed.  We are still doing more testing and WAITING.

Written by Matthew's mom in October 2008
Here is the listing of the patterns that
are being stitched forMatthew!

Thanks!  Matthew's Pattern Listing
Thank you to all who have signed up to stitch for Matthew.  Keep watching the main 2009 page for a link to the scan of the quilt after it is finished!
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