Dominic Ciero deals with rare DUP15q Syndrome

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Dominic Ciero is son of Justin and Tiffany Ciero. Dominic suffers with Dup15q syndrone. This is a rare genetic disorder that affects a very small portion of the population. Justin and Tiffany have organized a walk at Rhea County High School on September 18th to bring awareness to this disorder.(Photo:GaryBolden/RheaReview)

Walk on September 18, 2016 hopes to bring community awareness to Dup15q Syndrome

August 5, 2016

Dayton, TN —  Dominic Ciero and his family deal with a rare disorder, DUP15q, that is related to chromosomes. 15q11.2-13.1 duplication syndrome is basically chromosome duplication but has different ways the duplication occurs.  Dominic, who just turned five and his parents Tiffany and Justin deal with the effects of Dup15q everyday.  This is the first of a three part series on Dominic and his family that will educate the public on challenges of Dup15q for the family and individual.   This article will look at Dup15q syndrome awareness and discuss the upcoming September 18, 2016 walks occurring at eight different sites, including here in Evensville, Tennessee at the Rhea County High School Track and Football Field.  The Evensville Walk is scheduled for 9 am, with 8 am registration.  Tiffany and Justin are looking for volunteers to help with the walk.  They are also still needing sponsors.  To volunteer or sponsor call Tiffany at 423-309-6971.  Click on the link below to see more details about the fundraiser/awareness walk.

Believe Walk Evensville Website

Video interview with Justin and Tiffany Ciero.

Dup15q syndrome affects the child’s development in areas like motor skills, cognitive learning, speech, and others.  There are many different ways that the results of Dup15q can exhibit itself. There are severe and less severe problems with Dup15q.  Regretfully there is no cure for Dup15q and no vaccination you can take to prevent Dup15q.  It occurs most often as a random event but can be genetic and if so, it is not damaging if coming from paternal side but only from the maternal side.

The keys to dealing with Dup15q syndrone is identifying that child has Dup15q and then getting therapy.  The treatments includes several types of therapy depending on the child’s needs/severity of course, physical, speech, occupation, behavioral therapies etc.   Another great help is special education classes, where child received individual attention needed to develop learning and social skills. The treatments includes several types of therapy depending on the child’s needs/severity of course, physical, speech, occupation, behavioral therapies etc

One thing that Justin and Tiffany have done to help with public education and awareness is to organize a Believe Walk Evensville, that will bring awareness and raise funds for the Dup15q Alliance.  The Alliance is a group formed to help with awareness, treatment, and support. The Alliance is mainly comprised of over one thousand Dup15q parents.   The organization is a mostly volunteer run organization supported by grants, donations and many hours of volunteer effort. There are nine clinics, from Seattle to Miami that serve as resource for the parents to get care.  These clinics are funded by donations and the Dup15q walks.  This is second year of the walks and there will be eight walk sites occurring on September 18, 2016.  Those sites are from Seattle, Washington to Honolulu, Hawaii.

Next week we will look at how the Ciero family found out that Dominic had Dup15q syndrome and the process of getting help.

 

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