TARP awarness

I’m Michele (Shell) and I'm a wife, mum, sister, aunt and friend who loves to travel and bike ride but that is enough about me for the moment.  The story I want to share with you is that of my nephew John, his wife Kim and their amazing  little twin boys Ollie and Caleb.

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Ollie and Caleb were welcomed into the world 7 weeks early on the 9th April 2014 at the Mater Mother’s Hospital in Brisbane.  Caleb thrived in NICU when first born only later to find found out he has global developmental delays, poor growth, poor feeding, delayed speech, delayed fine and gross motor skills.  Due to these developmental delays and unusual features noted in both boys the family met with a genetic team in August 2015.  Caleb had blood sent to America and in July 2016 he was diagnosed with TARP syndrome. Ollie then also underwent testing and in August 2016 he was given the same diagnosis of TARP syndrome.
 
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TARP syndrome is a rare condition affecting males that causes several birth defects and stands for Talipes equinovarus, Atrial septal defect, Robin sequence, and Persistent left superior vena cava.  TARP syndrome has been reported to cause death before birth or soon after birth.

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Caleb has undergone hearing tests and in December 2016 he was diagnosed with moderately severe permanent hearing loss.  He wears hearing aids to support with hearing the world around him. He also underwent investigation on his eyes and it has been found that he is very short sighted and requires glasses with a prescription of -7, Caleb also suffers from glaucoma and has had a number of surgeries including laser and a tube implant to support in the treatment of this. 

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Caleb is a very energetic little man who loves to spend one day a week at mainstream long day care and also spends two days a week at a Special School in their Early Learning Years Program.  He is not able to walk on his own yet however he loves to cruise along furniture and also has great climbing skills.

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Ollie’s story is just as complex if not more than Caleb’s.  As you read above Ollie has also been diagnosed with TARP syndrome.  At birth he was placed on oxygen support, and has had ongoing respiratory issues.  At 2 weeks of age Ollie suffered a number of seizures, after an MRI and a consultation with the neurological team Kim and John (the parents) were told that Ollie had severe bleeding to both sides of his brain and a clot in the sagittal sinus, this had also propagated to other veins.  On  24th April 2014 Ollie was officially diagnosed with cerebral palsy.  At the time the family were told the major part of the damage occurred within the speech and motor function parts of the brain. As Ollie grows and develops Kim and John can clearly see these are the areas where he needs most of his support. 

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It was also found at birth that Ollie had a club foot also know as Talipes equinovarus. This is a main symptoms of TARP syndrome.  Ollie’s club foot has been treated with plaster casts, surgery and wearing specials boots and bar.  In July 2018 he was discharged from the club foot clinic at Lady Cilento Children’s Hospital.   

Ollie has had many, many, many return visit to Lady Cilento Children’s Hospital as he doesn’t cope well with any type of cold/flu and tends to require more oxygen support when sick. It's testament to the strength and resilience that Ollie shows that he's battled against Whooping Cough, multiple blood transfusions, repeated collapsed lungs, hypoxia, repeated bouts of bronchiolitis, a Golden Staph infection, multiple cases of Rhinovirus and the occasional surgical procedure and has come out the other side a happy, cheeky and loving little man.

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In December 2015 he had a Transpyloric tube (TPT) placed as he was unable to tolerate his nasal gastric (NG) feeds.  In August 2016 Ollie underwent a laparoscopic fundoplication, a surgical procedure to treat gastroesophageal reflux and a percutaneous endoscopic gastrostomy (PEG), a procedure in which a flexible feeding tube is placed through the abdominal wall and into the stomach, allowing us to place nutrition (formula), fluids and medications directly into his stomach, bypassing the mouth and esophagus, to prevent reflux.  

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Ollie sees a team at the hospital who keep an eye on the development and placement of his hips. Kim and John have just been told by the Hip Clinic that Ollie will need to undergo treatment within the next 12 months to correct his hip displacement. Spastic hip displacement is the second most common deformity seen in children with cerebral palsy (CP), and the long-term effects can be debilitating. Asymmetric muscle spasticity (inability to control muscles) has long been felt to be a major contributor to hip instability in children with CP.   This treatment will include major surgery, then a Pavlick harness or plaster cast for 6-8weeks and further surgery about 12months later.

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To date, this family has conquered every challenge thrown at them.  Due to the diagnosis of TARP and how little is known about this syndrome, this beautiful family has many more challenges ahead including not knowing how TARP will effect the boys physical and intellectual development and also how this syndrome may effect their life expectancy.  Kim was told there are only two surviving cases in the world of TARP syndrome when she received the boys diagnoses.  Through social media she has been able to connect with about ten other TARP families with children ageing only as old as 18 years.  As far as we known Ollie and Caleb are the only children in Australia with TARP syndrome and the only twins in the world with this diagnosis. 

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Being a close extended family when John and Kim told me the news of the twins TARP diagnosis I was filled with sadness and then frustration.  I couldn’t find  much information on TARP , other than what Kim and John explained and I didn’t know how to support my nephew and this family.  I am now therefore setting out to do something about this. 
 
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On 2nd September I will talking part in a cycle tour from Cape Tribulation to Cairns via the Atherton Tablelands to bring awareness to TARP syndrome.  This bicycle tour is over a period of 8 days, please visit https://cycleqld.com.au/ride/itinerary for more information on this ride
 
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I know I can’t bring awareness to this very, very rare syndrome alone and I am asking those of you who can to please support me with this campaign to bring awareness to TARP syndrome and the Ireland Family Journey. All donations raised will go directly to Ollie and Caleb. Their parents would love to install a ramp to allow easy and safe access for transitions from the house to the car, funds would also support the family with cost of parking while Ollie undergoes his hip surgery as well as future unforeseen costs for the boys.

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To learn more and continue to follow the Ireland family please see links below: 


Info on TARP:  https://rarediseases.info.nih.gov/diseases/10089/tarp-syndrome 

Ireland family facebook page is:  www.facebook.com/TARPIrelandFamily/ 

Ireland family Instagram page is at: Ireland_family_journey

Donations

  • Deb Somers 
    • $50 
    • 21 mos
  • Anonymous 
    • $25 
    • 21 mos
  • Anonymous 
    • $200 
    • 21 mos
  • Brian Daly 
    • $50 
    • 21 mos
  • Janet Sale 
    • $50 
    • 21 mos
See all

Organizer

Michele McLary 
Organizer
Brookfield, QLD
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