Grayson’s story Home Grayson’s story A purple spotty rash when Grayson was just eight months old was the first warning signs of his life-threatening genetic illness, which currently has no cure. In December 2017, Rachel and Leighton noticed the rash on their baby’s body, and took him immediately for tests. “Blood tests determined his platelet levels were nearly 0 and he was rushed into hospital,” Rachel recalled. Following numerous tests failing to identify a cause, Grayson was flown from Mackay Base Hospital to the Queensland Children’s Hospital in Brisbane, where doctors took a sample from Grayson’s bone marrow and discovered he was experiencing bone marrow failure. “Further genetic testing, throughout March 2018, was carried out to identify that he has TERT gene mutations and short telomeres, finally resulting in a diagnosis, in May, of Dyskeratosis congenita and unfortunately the more severe variant, Hoyeraal-Hreidarsson syndrome. These conditions mean for the rest of Grayson’s life, there are high chances he may experience liver, lung or other organ failures, as well as a high risk of cancer. “Over the past six months we have had nearly a dozen hospital stays in Queensland Children’s Hospital and Mackay Base Hospital, treating low blood levels, receiving blood transfusions, reoccurring bleeding issues, tests and procedures to identify the extent of Grayson’s medical issues and tissue typing to find a match for a bone marrow transplant,” Rachel explained. Grayson is now in the preparation stage for a bone marrow transplant, while doctors monitor a range of other issues as a result of his condition, including serious concerns for his eye sight if not treated as soon as possible. “The Bone marrow transplant is extremely risky to his life, however, we feel it is the best option for the longevity of his life,” Rachel explained. “Grayson also has a small cerebellum (back of the brain) which has caused him to have significant developmental delays. He has extensive physiotherapy, speech therapy and occupational therapy to help him gain motor skills and language development.” The young family has packed up their house to stay in Brisbane during the next six to 12 months to prepare for Grayson’s bone marrow transplant. “The bone marrow transplant will help to solve his blood and bone marrow issues, however there is no cure for his overall diagnosis and there is so much uncertainty for his future.”Donate now “Grayson’s diagnosis was a long process, needing the genetic research to be done in order to completely understand what was causing his bone marrow failure and any implications for his future. It was devastating to find out he has a life-threatening illness that has been passed down genetically and may affect Grayson and any future children for our family. “Grayson is at such a young age, so he is oblivious to the impacts this disorder is having on his life and causing his delays. He is still a happy, charming, TINY, one-year-old who brings joy to all those around him.” Grayson is one of 19 ambassadors for the Woolworths Regional Wall Tokens campaign. By purchasing a $2 wall token from now until the end of September, you are helping fund equipment and programs in your local hospital, which help families like Grayson’s through an emotional, stressful, and at times uncertain journey. Woolworths Regional Wall Tokens is an opportunity to highlight some of the brave kids throughout Queensland and northern New South Wales, who you can help by purchasing a wall token. Read more of our ambassador stories Your donation will help fund life-saving medical research and critical equipment, and provide the highest level of care for sick kids, just like Eli. Donate Once Donate Monthly Your donation will work wondersfor sick kids today.Would you like to donate monthly? Your donation of will work wonders for sick kids Your Details Can't find your address? State*ACTNSWNTQLDSATASVICWA Country Afghanistan Åland Islands Albania Algeria American Samoa Andorra Angola Anguilla Antarctica Antigua and Barbuda Argentina Armenia Aruba Australia Austria Azerbaijan Bahamas Bahrain Bangladesh Barbados Belarus Belgium Belize Benin Bermuda Bhutan Bolivia, Plurinational State of Bonaire, Sint Eustatius and Saba Bosnia and Herzegovina Botswana Bouvet Island Brazil British Indian Ocean Territory Brunei Darussalam Bulgaria Burkina Faso Burundi Cambodia Cameroon Canada Cape Verde Cayman Islands Central African Republic Chad Chile China Christmas Island Cocos (Keeling) Islands Colombia Comoros Congo Congo, the Democratic Republic of the Cook Islands Costa Rica Côte d'Ivoire Croatia Cuba Curaçao Cyprus Czech Republic Denmark Djibouti Dominica Dominican Republic Ecuador Egypt El Salvador Equatorial Guinea Eritrea Estonia Ethiopia Falkland Islands (Malvinas) Faroe Islands Fiji Finland France French Guiana French Polynesia French Southern Territories Gabon Gambia Georgia Germany Ghana Gibraltar Greece Greenland Grenada Guadeloupe Guam Guatemala Guernsey Guinea Guinea-Bissau Guyana Haiti Heard Island and McDonald Islands Holy See (Vatican City State) Honduras Hong Kong Hungary Iceland India Indonesia Iran, Islamic Republic of Iraq Ireland Isle of Man Israel Italy Jamaica Japan Jersey Jordan Kazakhstan Kenya Kiribati Korea, Democratic People's Republic of Korea, Republic of Kuwait Kyrgyzstan Lao People's Democratic Republic Latvia Lebanon Lesotho Liberia Libya Liechtenstein Lithuania Luxembourg Macao Macedonia, the former Yugoslav Republic of Madagascar Malawi Malaysia Maldives Mali Malta Marshall Islands Martinique Mauritania Mauritius Mayotte Mexico Micronesia, Federated States of Moldova, Republic of Monaco Mongolia Montenegro Montserrat Morocco Mozambique Myanmar Namibia Nauru Nepal Netherlands New Caledonia New Zealand Nicaragua Niger Nigeria Niue Norfolk Island Northern Mariana Islands Norway Oman Pakistan Palau Palestinian Territory, Occupied Panama Papua New Guinea Paraguay Peru Philippines Pitcairn Poland Portugal Puerto Rico Qatar Réunion Romania Russian Federation Rwanda Saint Barthélemy Saint Helena, Ascension and Tristan da Cunha Saint Kitts and Nevis Saint Lucia Saint Martin (French part) Saint Pierre and Miquelon Saint Vincent and the Grenadines Samoa San Marino Sao Tome and Principe Saudi Arabia Senegal Serbia Seychelles Sierra Leone Singapore Sint Maarten (Dutch part) Slovakia Slovenia Solomon Islands Somalia South Africa South Georgia and the South Sandwich Islands South Sudan Spain Sri Lanka Sudan Suriname Svalbard and Jan Mayen Swaziland Sweden Switzerland Syrian Arab Republic Taiwan, Province of China Tajikistan Tanzania, United Republic of Thailand Timor-Leste Togo Tokelau Tonga Trinidad and Tobago Tunisia Turkey Turkmenistan Turks and Caicos Islands Tuvalu Uganda Ukraine United Arab Emirates United Kingdom United States United States Minor Outlying Islands Uruguay Uzbekistan Vanuatu Venezuela, Bolivarian Republic of Viet Nam Virgin Islands, British Virgin Islands, U.S. Wallis and Futuna Western Sahara Yemen Zambia Zimbabwe < Back Your donation of will work wonders for sick kids Your donation of will work wonders for sick kids Your donation of will be charged on the of next month and the following months thereafter Your donation of will be charged today and on the of the following months thereafter Payment Details Credit Card Direct Debit MastercardVisaAmex Month*010203040506070809101112 Year*20172018201920202021202220232024202520262027202820292030 15th of every month 28th of every month What is CVV? What is Date of Debit? 15th of every month 28th of every month 15th of every month 28th of every month For more information please check our Terms & Conditions Your request is being processed. < Back Other ways you can help Everything we do for sick and injured kids is made possible by the generosity and support of our donors, partners and the community.