Who is Jarren?
Jarren is diagnosed with Congenital Hypomyelination Neuropathy (CHN). Since young, he was frequently admitted into ICU and each stay would last months. Jarren was tube-fed via NGT until he was 2 years old, where he underwent an operation to insert a PEG feeding button into his stomach. He also underwent a tracheostomy procedure later that same year. Due to the severity of his condition, Jarren relies on a ventilator for respiratory support. Many rare genetic disorders, including his condition, have no treatment or cure.
His journey
In the blink of an eye, it seemed just like yesterday, when we knew Jarren’s condition. The little boy whom we last read about on RDSS website, is now 10 years old and a Primary 4 child. The journey to where he is now is also full of challenges. Let us recap his journey along the way.
There were many challenges and difficulties faced during this journey.
He is currently in a normal mainstream primary – Northoaks Primary School. He still needs assistance in school from the caregiver such as bringing out his text books and toileting. He also needs more attention in class and extra tuition was given to help to do better academically.
Jarren needs to undergo sleep study test every year to monitor on his sleeping issues, especially at night time. The close monitoring is very much needed because we do not want him to have another episode of drastic weight loss. He does his yearly MLB to ensure that his airway is clear. Even after trying various milk formula, and even to test out if there are any nutritional deficiencies, Jarren continues to thrive better when he is being given the special formula. With dietician’s prescription, we have to give supplement him with the extra milk to nourish his body and to maintain his weight.
Being active members of RDSS, we are thankful for receiving support from society over the years.
Our family receives reimbursements under the Power for Life Program and also from Medical Intervention Support Scheme (MIS). This helps us to ease some of our financial burden.
Love is not Rare.
.%20Since%20young,%20he%20was%20frequently%20admitted%20into%20ICU%20and%20each%20stay%20would%20last%20months.%20Jarren%20was%20tube-fed%20via%20NGT%20until%20he%20was%202%20years%20old,%20where%20he%20underwent%20an%20operation%20to%20insert%20a%20PEG%20feeding%20button%20into%20his%20stomach.%20He%20also%20underwent%20a%20tracheostomy%20procedure%20later%20that%20same%20year.%20Due%20to%20the%20severity%20of%20his%20condition,%20Jarren%20relies%20on%20a%20ventilator%20for%20respiratory%20support.%20Many%20rare%20genetic%20disorders,%20including%20his%20condition,%20have%20no%20treatment%20or%20cure.emstrongHis%20journey/strong/emIn%20the%20blink%20of%20an%20eye,%20it%20seemed%20just%20like%20yesterday,%20when%20we%20knew%20Jarren's%20condition.%20The%20little%20boy%20whom%20we%20last%20read%20about%20on%20RDSS%20website,%20is%20now%2010%20years%20old%20and%20a%20Primary%204%20child.%20The%20journey%20to%20where%20he%20is%20now%20is%20also%20full%20of%20challenges. %20Let%20us%20recap%20his%20journey%20along%20the%20way.There%20were%20many%20challenges%20and%20difficulties%20faced%20during%20this%20journey.He%20is%20currently%20in%20a%20normal%20mainstream%20primary%20-%20Northoaks%20Primary%20School.%20He%20still%20needs%20assistance%20in%20school%20from%20the%20caregiver%20such%20as%20bringing%20out%20his%20text%20books%20and%20toileting.%20He%20also%20needs%20more%20attention%20in%20class%20and%20extra%20tuition%20was%20given%20to%20help%20to%20do%20better%20academically.a%20href=http://rdss.org.sg/wp-content/uploads/2014/04/Jarren-Skinny-Pic-rotated.jpgimg%20class=%20wp-image-2453%20alignleft%20src=http://rdss.org.sg/wp-content/uploads/2014/04/Jarren-Skinny-Pic-225x300.jpg%20alt=%20width=145%20height=193%20//aJarren%20needs%20to%20undergo%20sleep%20study%20test%20every%20year%20to%20monitor%20on%20his%20sleeping%20issues,%20especially%20at%20night%20time.%20The%20close%20monitoring%20is%20very%20much%20needed%20because%20we%20do%20not%20want%20him%20to%20have%20another%20episode%20of%20drastic%20weight%20loss. %20He%20does%20his%20yearly%20MLB%20to%20ensure%20that%20his%20airway%20is%20clear. %20Even%20after%20trying%20various%20milk%20formula,%20and%20even%20to%20test%20out%20if%20there%20are%20any%20nutritional%20deficiencies,%20Jarren%20continues%20to%20thrive%20better%20when%20he%20is%20being%20given%20the%20special%20formula.%20With%20dietician's%20prescription,%20we%20have%20to%20give%20supplement%20him%20with%20the%20extra%20milk%20to%20nourish%20his%20body%20and%20to%20maintain%20his%20weight.p%20style=text-align:%20center;strongBeing%20active%20members%20of%20RDSS,%20we%20are%20thankful%20for%20receiving%20support%20from%20society%20over%20the%20years.%20/strong/pOur%20family%20receives%20reimbursements%20under%20the%20Power%20for%20Life%20Program%20and%20also%20from%20Medical%20Intervention%20Support%20Scheme%20(MIS).%20This%20helps%20us%20to%20ease%20some%20of%20our%20financial%20burden.emLove%20is%20not%20Rare. /em){kind=link}