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    Posted February 5, 2014 by
    angeliam01
    Location
    Oklahoma City, Oklahoma
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    My Son, SCID and how it has affected his life...

     
    This letter is regarding my only child, Patrick Harper, who has Severe Combined Immune Deficiency (SCID). Please take the time to read the whole letter as it tells his story.

    SCID is the most severe of the Primary Immunodeficiency (PI) diseases. People with PIs are more susceptible to infections and health problems which lead to serious and debilitating diseases. SCID is estimated to occur in approximately 1 out of every 50,000 to 100,000 births. The SCID myth is that a person cannot live with SCID past young childhood although, science is finding out that this is not true. In my son’s case, the doctors have not been able to identify the causal effect since he was a generally healthy child. Patrick’s IgE level is < 0.1 IU/ml (less than one tenth) of a low normal while most people’s normal range is 0.0 – 100.0. His IgG total level is < 40.0 L mg/dL (1 L mg/dL = 10 milligrams) while normal is 700 – 1600. The IgA total normal range is 70 – 400 while Patrick’s is < 5.0 L mg/dl. IgM total normal range is 70 – 230 while Patrick’s is < 5.0 l mg/dL. His other IG numbers are: IgG1 < 15 L mg/dL; IgG2 < 20 L mg/dL; IgG3 3 L mg/dL and IgG4 L mg/dL. The normal ranges are as follows: IgG1 240 – 1118; IgG2 154 – 549; IgG2 21 – 134 and IgG4 7 – 89. Besides his IG and IgG (immunoglobulin) levels being extremely low, there aren’t any immunization titers even though he has had all of the required immunizations plus the flu and pneumonia vaccines over his lifetime. The few antibodies my son’s body does manufacture attack his body as if the antibodies were invading viruses and bacteria.

    My son is a hardworking individual who worked as an electrician for Kellogg Brown and Root (KBR), Longview TX, for six years and for the six years before that, Port-A-Jon of Jefferson TX. During that time, he acquired a vehicle and a house and became engaged to a wonderful woman with two children who has stuck by him through all of this. In December of 2012, he became very ill and couldn’t get a diagnosis after being seen by several physicians and a couple of hospitalizations yet he continued to work at KBR, a highly physical industrial job, through all of this. In April of 2013, he was seen at the University of Texas, Tyler, and was diagnosed with SCID, bronchiectasis and rheumatoid issues.

    Patrick can no longer work in the industrial type job for obvious health reasons. His body can't take the nature of the work anymore. The doctors have also stated that a common cold or flu could kill him because he does not have an immune system to fight the infections.

    He has applied for Social Security Disability Insurance (SSDI). Even with SCID being on the SSDI list for instant approval, he has been denied twice and is currently awaiting a hearing. The hearing can be scheduled for up to a year after getting to this phase. Meanwhile, he has lost his vehicle and is on the verge of losing his house and his fiancée’s vehicle. Patrick cannot get assistance from food stamps, etcetera, because up until he was laid off from KBR in April 2013, he had a well-paying job which they take into account when looking at the previous year’s tax returns when filing for assistance. His unemployment benefits ceased as of December 2013 so, for all intents and purposes, other than the very small amount of income his fiancée brings in, their income is non-existent. Beyond this, Patrick and his fiancée are only eating one meal a day in order for the children to be able to eat their fill. Going without food isn’t a good thing for those of us who have our health, but for someone in Patrick’s condition, it further compromises his immune system and health.

    I have been helping financially as I am able; however, it is limited due to medical bills from my brain surgery in December 2012. As a taxpayer who has worked for over 27 years, continues to work for the Department of Defense (DoD) and has paid faithfully into the Social Security (SS) system for my whole career, I am appalled and heartbroken at what my son and others in the same type of situation are going through. There are many programs out there to help people get back on their feet; yet it seems that those people, like my son, who truly need it and are willing to go back to work once they become re-trained or find a suitable job for their/his health conditions, fall through the cracks.

    It has also recently come to my attention that some insurance companies are denying life-saving treatments for people who have SCID and Common Variable Immune Deficiency (CVID).

    Please see it in your heart and soul to help my son and others with SCID and other rare diseases to receive the assistance, re-training, insurance benefits, etcetera they so desperately need to stay, be, or become productive members of society.

    Thank you for taking the time to read this letter and in advance for any assistance you may be able to give.

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