Stefan and Ashleigh are the wonderful, loving and dedicated Perth parents of two beautiful boys.
Their son, Miles, has a rare syndrome called 49XXXXY Syndrome, a type of chromosome abnormality characterised by the presence of 3 extra X chromosomes in males. The syndrome can affect certain parts of the body and be the cause of symptoms including but not limited to learning difficulty, intellectual disability, delayed growth, skeletal abnormalities, congenital heart defects and eye problems.
Kids Are Kids! has been working with the family in helping Miles to reach his full potential, through regular Physiotherapy and Speech Pathology sessions in their home and at the main Bateman centre.
“We felt an instant connection with Kids Are Kids! The support and genuine care and love for our little boy and his very rare syndrome has undeniably made an enormous impact to his ongoing development. We have found great comfort and security knowing that Miles is being so strongly cared for by the Kids Are Kids team”, said Miles’ Father Stefan.
Speech Pathologist, Ellie Burns says early intervention has helped Miles significantly, “Miles is now able to say around 20-50 words and he is using his communication device along with key word signs to support his communication. At home and in the community he is now able to express his needs and feelings giving him greater independence and assisting in his development”.
Physiotherapist, Tanya Erpen says “Miles is working really hard learning to walk. He is now able to stand and take early steps on his own”. This has been a combined effort by the therapy team and his hard working family to achieve this success.
To support other children with disabilities and developmental needs and to raise awareness of rare chromosomal syndromes, particularly 49XXXXY Syndrome, Miles’ Father Stefan and his friend Gideon participated in the Goodlife Rottnest Running Festival 2019 on 16 June.
In the lead up to the Festival their social media fundraising boomed through their Facebook page ‘Get Fit for the Kids’, with them matching each dollar donated with a push up. They also demonstrated their dedication by completing the HBF Run for a Reason and setting themselves weekend run challenges. In an effort to assist other families, Stefan is donating all funds raised to the Kids Are Kids! 2020 Therapy Scholarship Program.
Executive Officer Teresa Barrie said, “The funds raised will help us to continue our Scholarship Program for 2020. We aim to provide relevant and meaningful therapy services to families that have high therapy needs with limited or no access to funded services. The program relies solely on donations from individuals and corporations and we are so appreciative of the assistance from the Hanham Helbo family and their supporters”.
“When Miles was 4 months old were told he would have a long list of complications including global developmental delay, but that didn’t change anything for us. He was our beautiful little boy and there was nothing we wouldn’t do for him. In fact, his diagnose made us try harder and appreciate everything so much more”, said Stefan.
To speak to one of their caring team or learn more about Kids Are Kids! call 9313 6566.