JAYDENS LIGHT

The below is written by Jaydens Mummy please take the time to read about their journey and how we could make a difference to this little girls life. As they reside in South Africa the currency is in SA Rand but the total fundraising that we will be trying to acheive over time will be £10,000.

Her APGAR score was 1/10 and she weighed 780 grams when she was born (21 March 2009)! She survived 119 days in Neonatal ICU. During that time, she had numerous life threatening complications and infections, apnea, heart surgery, bleeding on the brain, chronic lung and intestinal infection (which almost took her life). She was on life support until (Oscillator and vibrating paddles on her chest) she started breathing on her own for the first time, about 6 weeks after birth.

Fortunately my mom and my daughter have the same blood type, so my mom became Jayden’s dedicated blood donor.

Jayden’s Paediatrician, Dr Humphrey Lewis, told me to extract milk for her from her second day, to give her a stronger chance of survival. I had to go onto medication to produce milk! She was fed via machine and through tubes. My milk helped her tremendously, because of the natural anti-bodies contained in breast milk.

I celebrated every single milestone she reached while she was in the Neonatal ICU (and of course every milestone thereafter), because I am so blessed to have her…

I held her in my arms for the very first time when she was 21 days old. It was such an emotional day for me because I was not allowed to pick her up at all before she was 21 days old! I was only allowed to cup her head and feet in my hands prior to picking her up… I started Kangaroo Therapy with Jayden on day 54 (as you can see in this photo). This was another awesome day for me, because I was allowed to put her on my chest so that she could hear my heart beat!

Jayden’s 119 day journey in Neonatal ICU was a difficult one, but it was only the beginning of a lifetime journey for me with my daughter. A journey which has become the most important part of my life…

She has come a very long way since then.

Jayden started walking just before she had her second birthday. She took her time to get there, but finally managed to walk 3 steps at a time, on her own.

She started going to Pre-school just before her fourth birthday and the teachers at the school pointed out that she has certain physical challenges when participating in the physical activities. I take my hat off to her for her sheer determination in trying to do as we

ll as all her other little classmates! Jayden started with Occupational Therapy to assist and facilitate her with those physical challenges.

Unfortunately I was retrenched at the end of 2013 and have not been successful with securing another job. I was forced to cancel the medical aid, after being retrenched, and as a result Jayden couldn’t continue with the much needed Occupational Therapy.

I did some research on the internet and found a website called OT Mom and started doing Home Occupational Therapy with Jayden. I continued with home OT since 2016, when she started school at Maria Montessori House until earlier this year, to assist her with her balance, walking and coordination, as well as her handwriting. After a few years of doing home OT, accompanied by lots of stretching exercises, I didn’t see much improvement in her mobility, her ability to balance and her handwriting. I knew there was a reason why she was struggling, so I finally made a plan to have her assessed by a specialist.

I must say that her determination to successfully participate in physical activities at school, is so courageous and remarkable! She tries her best to participate in all the different sports and athletics at the school, even though she still doesn’t get it right and falls to the ground (a few times) during every session. She knows she’ll finish last in every race and she still gives it her all and tries her best to finish each race at ev

ery school sports day! That on its own, is priceless!

I finally took her to an Orthopedic Surgeon earlier this year, Dr Mark Eltringham, who diagnosed her with Cerebral Palsy. Dr Eltringham was recommended by a friend of a friend, Dr David Illos.

Dr Eltringham said that the Cerebral Palsy occurred because of the bleeding on her brain during the first five weeks of her life in Neonatal ICU. Jayden has Spastic Diplegia from the Cerebral Palsy and needs urgent medical procedures and treatments, to assist with her mobility, coordination and balance. He listed 3 procedures and treatments, to aid her physically. He also referred me to a Paediatric Neurologist, who will be able to determine the extent of the damage to her brain with a consultation, followed by an MRI scan of her brain.

Following the above treatments and pr

ocedures from the Orthopedic Surgeon and the Paediatric Neurologist, Jayden will require ongoing Occupational Therapy, as well as Physio Therapy, to assist her physical development and to maintain her mobility, coordination and balance.

Further to the above, Jayden’s hearing pres

ented somewhat of a challenge over the past few years. I took her for her first hearing test when she was only 6 months old, but her ear canals were still too small to do tests. I took her for the fourth time when she was 4 years old, but again they couldn’t get a proper reading. Then I took her again in 2013 and again they couldn’t get a proper reading. The Audiologist referred her to a doctor at a travel clinic who would put her under anesthetic, to thoroughly inspect and analyze her ears. I decided that Jayden had been through enough through the years and I didn’t want to put her through that kind of trauma, if it wasn’t immediately necessary. Her hearing was finally assessed by an Audiologist, Bronwyn Harris, at Fourways Life Hospital earlier this year. Jayden was diagnosed with medium to severe hearing loss (40% and 45% hearing loss) for both ears. Jayden subsequently needs hearing aids for both ears, as well as speech therapy to correct her speech. She often sounds like a deaf person when she speaks and she has learnt to read lips in order to “hear” and see what people are saying. The Audiologist also suggested that we get a FM microphone for the classroom teacher, which will transmit to the hearing aids that Jayden will be wearing permanently. This will ensure that Jayden will be able to hear everything that teacher says in the classroom.

Maria Montessori House has been the best school for Jayden since she started there in 2016 for Grade 1. Of course I had no idea that she would be diagnosed with Cerebral Palsy (resulting in a few diagnosed challenges) when she started at the school. The school has been very supportive with her physical, emotional and academic needs and I couldn’t be more grateful for their supportive attitude towards my daughter. Maria Montessori House is not a school for special or different needs children, but they’ve embraced Jayden’s challenges and are working with them to help her do her best.

It has taken a lot for me to write this letter, asking for help, but I’ve opened that door out of desperation and with an urgent plead. My daughter is the most important person in my life and I am doing everything I possibly can to try and provide for her. Her medical needs are too big for me to be able to provide for right now… Please could you assist me with raising funds for Jayden’s special needs?

The following page has a comprehensive breakdown of everything that has been mentioned in this letter…

COMPREHENSIVE BREAKDOWN

Orthopedic Surgeon ConsultationR1, 100 per consultation/treatment

Paediatric Neurologist ConsultationR2, 000 per consultation/treatment

MRI Brain ScanR12, 000

Treatment 1

SERIAL PLASTERSR2, 000 per plaster per leg

(New plasters every 2 weeks until goal is achieved)

Treatment 2

SERIAL PLASTERS and BOTOXAs above

PLUS R30, 000 – 40, 000

(New plasters every 2 weeks until goal is achieved)

Treatment 3

SURGERY+/- R50, 000

(Both legs will be in plaster for 6 weeks)

Physio Therapy for a minimum of 12 monthsR42, 000

Occupational Therapy for a minimum of

12 monthsR42, 000

Hearing Aids for both ears R21,000

FM radio system for school classroomsR14,000

Speech Therapy for a minimum of 12 month

sR TBA (still waiting for prices)

Maria Montessori House School FeesR52, 000 for the remainder of 2018

Contact details for Jayden’s doctors and the audiologist:

Dr Mark Eltringham - Orthopedic Surgeon, Sunninghill Hospital

Email: eltringham.rooms@gmail.com

Telephone: 011 806 1863

Dr T Aduc - Paediatric Neurologist , Sunninghill Hospital Telephone: 011 806 1500

Bronwyn Harris - Audiologist , Fourways Life Hospital

Email: bronwyn@jhbaudiology.co.za

Telephone: 011 875 1750

Contact details for Jayden’s school Principal at Maria Montessori House:

Nika Funnel - Principal Maria Montessori House (Cedar Road)

Email: admin@mariamontessori.co.za Telephone: 011 460 1737

I would like to take this opportunity to thank you for taking the time to read through my letter.

Please do not hesitate to contact me should you require further details or explanations on the information I’ve provided and the humble request I’ve made.

Yours Sincerely,

MADELENE PIENAAR Mother of Jayden Pienaar

Mobile: +27 76 285 0299